It is with heartfelt sadness that Act 4 Inclusion must announce the passing of our dear friend and Facilitator, Sandra Daniels. Sandra died peacefully Sunday morning, 4th February 2024, as a result of a terminal illness.
Sandra had attended the inaugural meeting of Reclaim Social Care, and later became its vice chair. When RSC became Act 4 Inclusion, she became its Facilitator. She was a tireless fighter for Social Justice.
We will miss her warmth, drive and determination, but most of all her humanity. Our task now is to continue the work Sandra helped to establish.
Rob Punton is the coordinator of the A4I Coproduction Subgroup. He attended the TUC march and rally held in London on 18 June 2022. The shameful treatment of some activists by the TUC has warranted the following complaint by Rob to the TUC.
“This is my official complaint to the Trade Union Congress (TUC) regarding the treatment I experienced surrounding their march and rally held on 18th June 2022,”
“It has been a tough time for everyone recently with enormous increases in the cost-of-living and stagnant household incomes everyone is fearful for their futures. As disabled people we not only fear for our lifestyles we are scared we may not even survive.”
“So, when I heard the TUC were holding a march and a rally, I was determined to be there, even though I had not been to London since lock down ended (3 years). The TUC did a lot of excellent work ensuring as many people as possible could attend, this included providing free coaches to get people there. When I enquired about provision for wheelchair users, I hit a dead end. They had discussed a plan but that plan never came into being an actual physical thing.”
“I must thank Stand Up To Racism and Disabled People Against the Cuts fir contributing to my accommodation and travel costs enabling me to attend. Once I got there, I was uplifted to see so many attending from across our nation, to make a stand against our uncaring, cruel government.”
“I made my way to the front so as not to get swamped by the crowd. At this point let me point out I am aware that there was an accessible shorter march, but I decided to take on the longer march, which is my right.”
“When the march began, I set off. This is when encountered my first TUC steward, she asked me to move aside to let the front of the march through, I reluctantly agreed and slipped back into the pack. Which meant I had to be doubly vigilante to ensure I did not hurt people by bumping into them as they varied their pace in front of me.”
“Things continued without further incident until about a third if the way around the march another steward approached me from behind and demanded I move aside. This time I decided to ignore him, but he persisted, and I persisted ignoring him. My personal assistant Darren, who was supporting me noticed the situation and intervened on my behalf. During this exchange I was concentrating on steering my chair ensuring I did not injured people around me. The steward became rude and aggressive towards my P.A. (Personal Assistant), this caused people around us to get involved, which resulted un him realising he was in the wrong, he then refused to engage and acted like a truculent toddler. The march continued for me without further incident.”
“At the end of the march, we were shown to the accessible viewing point for wheelchair users, which frankly was a joke, however not a funny one. The viewing area was directly behind a stone statue. I know that some believe that we are compensated for having impairments, I can guarantee you this does not include superheroes powers that enable us to see through solid objects. Even if the view was not obstructed, we were miles away from the stage, even the most eagle eyed would have struggled.”
“So, another trek was needed to somehow find a place where we could see and hear the speakers.”
“Ironically as this was playing out Dave Allen from the Disabled section of TUC was on stage telling the rally how the TUC was supporting disabled people both in employment and those unable to work, which I found quire funny in a sick sense. Blame my sense of humour.”
“In conclusion it just remains for me to say it proves little or no thought is given to the needs of disabled people when organising events,”
“My message to the TUC is this: Disabled people have enough trouble fighting our adversaries without battling our allies. Sort yourselves out!”
“With friends like you who needs enemies?”
“To throw the words of the TUC back at them: WE DEMAND BETTER”
“I am sending pictures as further evidence.”
“Paula Peters is sending an account of her own experiences and observations”
Act 4 Inclusion as an organisation is still in its infancy despite emerging from the trials and tribulations of activists who came together to form Reclaim Social Care. Our journey has been one of exploration and challenge made possible by bringing together diverse groups who have different knowledge and experience; yet, at the same time, understand the current system at all levels of society is failing the majority of people. Our name and vision represent the direction of travel we wish to follow. We want to work together to transform society and turn it into one that respects diversity, challenges inequality, and provides a support system capable of delivering community-based services and Independent Living.
Our membership mainly comes from campaigners who cut their teeth either within the trade union movement or disabled people’s movement; some, of course, have been involved in both. It is not surprising therefore that Act 4 Inclusion is based upon the principles to be found within both movements. Nevertheless, it has to be recognized that neither movement has developed substantial forms of inclusive practice and diverse voices still struggle to be heard. The trade union movement in particular has its roots within the white, non-disabled, working classes and its liberal and social democratic traditions often reveal themselves in forms of paternalism and unequal power relations. Neoliberalism has impacted across all levels of society which means neither of the movements is as radical as they once were.
Since the late 1980s disabled trade unionists within both movements have sought to change cultures and instill in unions an understanding of the social approach towards disability. Unfortunately, and perhaps ironically, the passing of the Disability Discrimination Act 1995 saw the beginning of the decline of the influence of the disabled people’s movement inside unions and therefore ‘disability issues’ have either become ‘equality issues’ employing dominant ways of viewing disabled people, thereby adopting ‘problem solving’ approaches, or the involvement of disabled people has become pure tokenism. The 2000s have seen frustrating times for disabled trade unionists and disabled people as a whole. Despite being a major target in the Age of Austerity, disabled people have had to battle to be included in conferences and marches.
The TUC March on June 18, 2022, witnessed a range of unpleasant events involving disabled people. This included patronage and discriminatory practices. A disabled member of A4I was caught up in these events and that brought home to us how important it is to challenge unacceptable behaviour whilst at the same time recognizing the need to continue to make interventions into the trade unions.
The A4I’s vision is based upon developing a greater understanding of the interconnectedness of all ecological systems and that all environments impact upon everyone’s well-being. The current cost of living crisis is connected to the climate crisis and the crisis within Adult Social Care. Older and disabled people’s lives and interests are bound up within these major events as well, which is why it is essential for A4I to open up a dialogue within trade unions to promote not only our vision but also our ways of working. Within the trade unions we must promote an eco-social approach to service delivery to counteract the narrow inadequate proposal for a National Care Service. We must encourage coproduction, the development of inclusive practice based upon an understanding of intersectional issues, and challenge disablism within their cultures.
This requires A4I to develop its links with the trade union movement and to support our Trade Union Officer to bring together A4I trade union members to develop a strategy to promote our approach. The Trade Union motto has been ‘United We Stand, Divided We Fall’; currently we are divided, disabled people are being excluded and older people seen as commodities. This situation has to change and A4I can play a role in achieving this by being proactive and taking a clear message into the trade unions: ‘United We Stand’ and ‘Nothing About Us, Without Us’ must add up to the same thing.
Disabled People Against the Cuts (DPAC) want to hear from disabled people and their allies who experienced access issues in the lead up to the demonstration and on the day as they will be lodging a formal complaint to the TUC. Please support their campaign: https://dpac.uk.net/2022/06/call-out-for-your-experiences-of-the-tuc-london-demo-on-18th-june/?fbclid=IwAR2OboG5JufV2RHztzZn53AhOHP4K3rzIcfk4_h2eZPw36c2WWgSRQEFAtU
This post represents the thoughts of our Engagement Officer, Bob Williams-Findlay. It is posted here to stimulate thought and debate amongst members of our community, so we would welcome your contributions. It is a personal opinion, and does not necessarily reflect the official position of Act for Inclusion.
The focus of this third blog in the series is to consider aspects of the perceived differences disabled activists saw between independent versus integrated living. One of the reasons for writing this blog is that I believe it enables us to gain insights into the philosophical, ideological and political differences inside the disabled people’s movements. In my opinion the differences are not simply conceptual ones but go straight to the core issue: what do disabled people really want?
In this blog it is not my intention to come down on one side or the other. I believe the general contradiction I posed in the first post remains within both camps: is disabled people’s emancipation achievable within capitalist society? The second half of this blog concerns itself with what attitude we should take not only towards the concepts of integration and inclusion, but how either might sit within a transformative agenda.
“….the newly formed Derbyshire Coalition of Disabled People suggested the establishment of a Centre for Independent Living in the County. In
a significant step, the Coalition sought and obtained the in principle support of the County Council for the proposal. This set the scene for a collaborative approach to the development of practical services and facilities which are needed if the IYDP aim of ‘full participation and equality’ is to be achieved for all disabled people.” (1)
This was similar to what occurred in Birmingham three years later when Birmingham Disability Rights Group approached the City Council about establishing a Disability Resource Centre. (2) In the case of the Coalition they were conscious of the need to review the philosophy and practices of the independent living movement as it had developed throughout the Seventies in the USA in order to relate it to the development of the work undertaken by the disabled peoples’ movement in Britain over the same period. As Ken informed us:
“Centres for Independent Living have been the response of disabled people in the United States to their exclusion from full social participation. …. Disabled people themselves run services relevant to their self-determined needs; people with all kinds of impairment are involved; services and facilities help disabled individuals achieve their own life-choices.” (3)
Ken goes on to make an important observation that the newly created movement due to the existence of our Welfare State took a different form to that of their counterparts in the USA.
“The call was not for control of their own services through ‘independent living centres’ or their equivalent, but rather for the State to provide better benefits or other services. The assumption was that more money or better organisation of existing resources would solve the problem of our exclusion from mainstream social activity. Some disabled people, however argued strongly that such an administrative approach would be quite wrong and as the movement developed the issue of control over our own lives became paramount.” (4)
The Coalition in line with the thinking of UPIAS fully accepted that disabled people need help to overcome disability [social restriction], but in addition, held the view that appropriate aspects of professional practice can be potent and productive elements in this process. I believe this recognition has become lost over time and there is an unhelpful ‘anti-professional’ tendency among some disabled activists. They tend to collapse together the management of professional theory and practice with the knowledge and activities in the field thereby throwing the baby out with the bathwater.
What this does is undermine our ability to gain allies, build alliances, and create progressive forms of coproduction.
Another significant observation made by Ken and DCIL was:
“The independent living movement has operated as a positive inspiration beyond its own boundaries. But the removal of barriers, per se, is not particularly progressive and may even generate oppressive, practices in the process. The ILM will become a genuinely radical current within the wider movement when it inquires more searchingly into the causes of the barriers it seeks to remove. This requires development of an historical perspective and a more searching analysis of the social relations between disabled and non-disabled people.” (5)
This is precisely the message I have sought to deliver over the last decade with reference not only in relation to the role of the ILM, but also the Social Model of disability and disability politics in general. (6) Unless we analyse the nature of the society that exists, it will be impossible to address the root causes of disabled people’s social oppression. My argument comes through my understanding of historical materialism and its use of dialectics.
The underplaying of the need to develop an historical perspective and a more searching analysis of the social relations between disabled and non-disabled people has contributed to the divisions which appeared within the UKILM. How integration was viewed in the early 1980s compared to today has to be placed within the context of how disabled people see their social positioning within society.
The questioning of the use of the term “independent living” has always existed because there are problems with what ‘independence’ means. Unlike Reclaiming Our Futures Alliance (ROFA), who grappled with whether to retain the term or not. ROFA decided to stick with it, whereas DCDP opted for a different path. DCDP acknowledged that mainstream interpretations of ‘independent’ differed significantly from definitions put out by those who identify with the ILM; they nonetheless believed that because the raison d’etre of the movement was crystallised around the issue of “independence”, this would itself eventually prove to be a barrier to making progress. They concluded:
“As a result, the ILM has had no option but to choose its own definitions since the world in which the ILM seeks to participate is often confused as to the purpose of the movement.” (7)
They also place the word ‘independence’ within the socio-political and cultural context of American society’s commitment to promoting ‘rugged individualism and untrammelled personal freedom as the epitome of human development’. Years later, Finkelstein made a similar point when he argued US IL corresponded to “a basic commitment to the American capitalist system with its free market, pluralist ideology”. (8) Here then is a major schism, however Ken stated:
“For the Americans however the term was apparently their considered choice and, within the status quo, it was nevertheless a radical position for them. For disabled people here in Britain however, we too have had to make a conscious choice, and in Derbyshire the term ’integrated living’ has come to be chosen as representing a less confusing as well as more progressive description of what we are about in establishing DCIL.” (9)
I believe it is important to try and understand the difference in approach from a political stance and how this then impacts on working for social change. Ken argues both terms inevitably carry deeper, symbolic messages with the fundamental point being that:
“’Integrated Living’ implies a commitment to society: ‘Independent Living’ implies a commitment to self. It may be argued that the latter is a vital corrective for disabled people whose personal development has become subject to the control of others. It may be argued that it is a potent motivator to hold up the idea of independence before those who are denied It. However, the more one attempts to explain what ‘independent living’ is, paradoxically, the closer one comes to discussing the concept in terms of integration.” (10)
Ken also highlights a tension which remains problematic in my opinion when we try to develop our arguments around personal and collective rights and freedoms. He wrote:
“For example, ‘independent living’ is at once described as a process of ‘identifying choices and creating personal solutions’, and as the ‘quality of life attained with help’. In other words, personal choices for disabled people can be sterile in the absence of the help necessary to make them a reality. Introducing help is to introduce the realities of dependence and interdependence which are the very building blocks of integration.” (Emphasis – added BWF) (11)
Having choice and control over lifestyles is conditioned in most instances by the social relations that exist for individuals and distinct groups within society. To negate this reality prevents us from understanding how oppressions manifest themselves. It is a core aspect of the social interpretation of disability – that, unless we break the causal link between impairment and encountered social restrictions (disability), then we negate the existence of social oppression. We end up ‘blaming’ the individual’s body for their social situation, rather than arguing for the creation of new social relations that would accommodate diverse bodies and lifestyles. This is the challenge and at the same time tension: how do we create new social relations within a society reliant on inequalities and exploitative social relations?
Ken’s article proceeds to consider potentially destructive connotations that can lie behind certain perspectives on “independent living”. Within capitalism, the power of ‘individualism’ has always been extremely strong, but particularly so within the doctrine of Neoliberalism. This is why it is vital to be clear as to what ‘choice and control’ means in terms of personal and collective rights and freedoms. Ken recognises the tension that exists when he writes:
“To seek the ability to decide and choose what one personally wants, to seek to assume and establish self-control and self-determination are potent mental constructs which can have devastating effects in the real world. For example, it can lead disabled people into using human and other resources simply as the means to achieve personal ends, to be discarded or changed as the process of identifying personal choices and creating personal solutions also changes. In turn, it can lead non- disabled people to allow their able-bodiedness to be used as mere mechanical extensions of our own physical inability to translate thought into action.” (12)
Personally, I find these words extremely chilling as they resonate with my own thinking about the current demands made by particular groups of disabled people and the politics that underpin them. Like DCDP, I question aspects of the culture within the ILM where it seems to collude with dominant ideologies and practice. If the focus is indeed on ‘self’, then implicit within this prioritisation is the possibility of a lack of true commitment to all things outside oneself, except those which serve immediate ends. The psychological, social and ecological consequences of this mode of thought are all too obvious in today’s world.
The vision of A4I works from the belief that the true focus has to be on “equality of opportunity and the full participation of disabled people in everyday life in the mainstream of society” (13) It has been my opinion that this has been the existing description of what “independent living” means. It is interesting, therefore, to discover that DCDP viewed this focus as being “really about integrated living.” In their opinion this latter focus contains a commitment to notions of unity, mutuality and wholeness. (14) Later, I will consider how best to express these notions, along with the idea of equality of opportunity and the full participation, within the context of inclusive practice and dialectical thinking. (15)
I am therefore sympathetic to the opinion that it “is easy to see how misunderstandings occur when these contraposing views are attempted to be contained within the one ‘philosophy’ of independent living.” (16) Before proceeding to explore what DCDP meant by ‘integrated living’ it is important to acknowledge that the notion of ‘inclusion’ was not as established as it is now when Ken wrote his paper. The work Sandra Daniels, Dorothy Gould and I have done in relation to the ROFA position paper, ‘Independent Living for the Future’, which outlines their vision for a national independent living service, exposed these contraposing views. (17) Whilst supportive of the idea of a national independent living service, I remain critical of the lack of clarity that exists because the current vision straddles the two views presented in Ken’s paper.
Returning to Ken’s paper, it is important to understand how DCDP viewed what they meant with the use of the term “integrated living” and how it shaped the work of the Derbyshire Centre for Integrated Living (DCIL). Ken wrote:
“The use of the term ‘integrated living’ is an attempt to make clear and get in context both the end and the means of the DCIL. It aims for the full social integration of disabled people and it seeks to achieve it by disabled and non-disabled people working together. …. The DCIL is also integrated into a strategy for the development of Social Services which also has as its aims the integration of disabled people into the social, economic and political life of the County. In turn, this strategy is being jointly developed with the Health Authorities, and DCIL is seeking also to integrate representation from other statutory and voluntary bodies into its management structure. The commitment to integration is being pursued both in theory and practice.” (18)
What is striking about this approach advocated by DCDP and DCIL is that I could quite simply substitute ‘inclusive’ for ‘integration’ and leave the rest of the text unaltered and it would sit quite comfortably within the framework of the A4I vision. So, are we simply playing with words or semantics? I do not believe we are and I hope to able to explain why I hold this view. Before making my case, I want to add an additional consideration. It is important, I believe, not to view the approach advocated by DCDP and DCIL in isolation but to link it with the work undertaken by Vic Finkelstein. (19) It is not practical to critique Vic’s position here however the following quotation captures its essence:
“While, in many respects ‘care’ can be interpreted as irresolute support it would be incorrect, in my opinion, to regard the availability of care as having no relevance to disabled people, whatever their age. The real challenge is developing appropriate mainstream community services based upon equal opportunities for all, is winning over service users, providers and policy makers to the notion of disentangling appropriate skills located in the training and qualifications of the current caring professions together with the hitherto unknown and neglected skills that may be informed by a support paradigm and repackaging these into new community based professions.” (20)
He originally spoke of this model of provision in terms of it being a ‘resource consultancy’. He put forward the view:
“The new community worker (Resource Consultant) would need to be conversant with care and support skills which are at the service of aspirant citizens who face social and physical barriers in achieving their personal goals. This lifestyle orientation would be geared towards assisting people attain their personal goals and aspirations. The focus of any identification or assessment procedure would not be on the origin and meaning of an individual’s deficits but making resources available for future goals. This could not be guided by any stereotype which sees disabled people in terms of pre-ordained dependent lifestyles. Unravelling the care and support components of community based assistance and repackaging the exposed skills more appropriately according to the perspectives of the principle resource users could generate more profound opportunities for users to contribute truly innovative approaches to the services that they use. This could create a mutually healthy learning relationship between disabled people and service consultants.” (21)
Vic developed his thinking further, and while I would question aspects of his proposal, I am broadly supportive of what he sought to achieve. Unfortunately to date, the UKILM has not considered Vic’s approach seriously because, like the A4I’s vision, it marks a radical departure from what currently exists within Adult Social Care and thinking within UKIL practice; therefore it sits as a bridge too far. One of my personal aims is to introduce Vic’s thinking into the dialogue around transforming Social Care and Independent Living.
There is one further issue raised by Ken’s paper that relates to the way we need to develop our thinking. Within DCIL’s approach towards ‘integrated living’, which I personally view as a form of ‘coproduction’, there is a vital operational consideration that outlines the Centre’s relationship with the Coalition. Ken wrote:
“One reason is that the Coalition has recognised that a mixture of ‘consumer advocacy’ and service provision within one organisation can be counter- productive. DCDP and DCIL are thus legally separate, autonomous bodies and each can pursue separate roles with the same overarching aim. DCIL will not have to worry about ‘biting the hand that feeds’ its service provision role.
Choosing to develop these practical services and facilities according to a collaborative rather than a separatist model, was consistent with a basic principle of ‘integrated living’ – which recognises that our full social integration requires that services themselves must be integrated in the method of their design, delivery and control. But also offered an opportunity to introduce a level of accountability into service provision which did not hitherto exist.” (22)
In the late 1980s Birmingham Disability Rights Group held a similar position in relation to the Birmingham Disability Resource Centre. Operating a division in purpose however does not mean there should be no relationship between the two bodies. The right to representation from BDRG on the BDRC management board was in the constitution. It nevertheless has political consequences because there is a need to address the difference between operating self-organised representative advocacy and service delivery.
The final observation I wish to make in relation to Ken’s paper is how the following quotation highlights contradictions and tensions that run through the entire length and breadth of disability politics. Once again it brings into focus what I view as the dialectical nature of our struggle – addressing what we want by addressing at the same time the things which prevent us from achieving our goal. Ken argued:
“DCIL is obviously concerned with providing or encouraging the means of overcoming disability but the concept of ‘integrated living’ requires that the task is approached in a particular way. It requires us to become ever more aware of the historical process which has produced the phenomenon we are seeking to overcome. It requires us to recognise that disability is the product of a particular social relationship between disabled and non-disabled people which cannot be cured by isolationism or separatism. It demands that we enquire into the causes of disability and that we reject all the varied devices which deny the participation of disabled people in contemporary social life.” (23)
To overcome disability, which is the removal of the social restrictions that cause disabled people’s exclusion from and marginalisation within mainstream social activities, one has to address existing social relations. For disabled people to be ‘included’ requires removing the causes behind the exclusion and that means dealing with the nature of society itself and its significance for those with impairments
I believe it would be all too easy to disappear down a rabbit hole and give up owing to the huge task confronting us. Neither A4I nor I have all the answers and neither are we at this moment in time in a position to greatly influence developments in the short-term among policy makers or disabled and nondisabled communities. What I see is a small group that is willing to investigate, learn, enter into dialogue, and challenge the existing ideas in a positive sense of the word. To discover the way forward, A4I must discuss the meanings of the terms: integration, inclusion, and transformation, with its members and allies, before seeking to develop a shared ‘understanding’ that can be employed in their arguments and material.
To discuss terms such as integration, inclusion and transformation in isolation or without a given context, as the recent A4I members’ meeting illustrated, would be problematic. There is a strong argument which says that each of the three concepts can or have been applied in ways which seek piecemeal social change. Whilst this is true, I believe both inclusion and transformation can interconnect in ways which are capable of producing transformative system change. What radical activists need to do is provide context and signpost to the debates that have taken place in the past so that we may draw lessons from them and from this exercise produce an understanding of how these concepts can aid the struggle. I hope my series of blogs can be part of the process of beginning a dialogue which seeks to clarify the meanings we would like to see attached to concepts associated with the emancipation struggle of disabled people.
Integration or inclusion?
In the two blogs I have written so far on ‘what do disabled people really want’, I have argued that within mainstream discourses there appears to be two distinct meanings that have been given to the concept of ‘social integration’ in the context of disabled people’s position within society. As I pointed out in the first blog, the debate between integration versus inclusion began in relation to global education systems and gained impetus after the World Conference on Special Needs Education in Salamanca in 1994. Lise Vislie explains that:
“…. with the adoption of the Salamanca Statement and Framework for Action on Special Needs Education, represents the event that definitely set the policy agenda for inclusive education on a global basis (Unesco, 1994). According to the Unesco documents, inclusive education
— challenges all exclusionary policies and practices in education;
— is based on a growing international consensus of the right of all children to a common education in their locality regardless of their background, attainment or disability;
— aims at providing good-quality education for learners and a community-based education for all.
The Salamanca Statement, adopted by representatives of 92 governments and 25 international organizations in June 1994, has since generally been regarded as a powerful instrument for innovations in the field.” (24)
Within the A4I meeting and my blog series, I have discussed the debate between integration versus inclusion beyond the framework of education. The usual meaning given to integration is the situation where there is a process of placing disabled people into mainstream settings provided that they are able to adapt to the standardised requirements of the settings with minimal accommodation. This, of course, is very different from how Davis and Finkelstein articulated what the term meant to them. In their understanding it was not about disabled people fitting into the status quo, but rather, the coming together of disabled and non-disabled people to create ‘equal opportunities for all’. Before voicing an opinion on this, I want to allow Finkelstein space to articulate his perspective. He wrote:
“On the ground, in the community, the fragmenting health and welfare services have opened a slot where disabled people have managed to start their own services guided by the social model of disability and, although perhaps often not recognised as such, where they are developing and implementing interventions based on the principle of ‘support’. These are often referred to under the heading ‘independent living’, and the facilities as ‘Centres for Independent Living’ (CILs). This can be rather confusing because the term ‘independence’ is well-established in the language of ‘care’ and perhaps reflects the extent to which the culture of care has been absorbed into the consciousness of prevailing service users. The term ‘integration’ is also used to highlight disabled people’s aspiration to integrate into mainstream society with the
concomitant goal of integrating their own service ideas with enabling community based services. CILs, in this case, refers to ‘Centres for Integrated Living’.” (25)
Here we see once again the difference of opinion over language and meaning, but I want to particularly draw your attention to this sentence:
“The term ‘integration’ is also used to highlight disabled people’s aspiration to integrate into mainstream society with the concomitant
goal of integrating their own service ideas with enabling community based services.” In my opinion this echoes UPIAS’ original ‘challenge’ to society. By talking about ‘disabled people’s aspiration to integrate’, what he is affectedly doing is putting forward a transitional demand. He wrote this in 1999, but it foretold what was waiting in the wings because he went on to say:
“These developments are still at a very early stage and under
considerable threat from economic constraints and a still
strident advocacy of community care by non-disabled service
providers. In essence, while community care remains an
esoteric service independent of mainstream provision,
organisations of disabled people have invested considerable
and growing attention on mainstreaming their needs alongside
society’s diverse population groups and many faceted cultures.
An important constituent of this development has been the
creation of a disability culture challenging the hegemony of the
caring culture. In my view the unfolding social model of
disability not only needs to rediscover the importance of the
long suppressed ‘support’ component of assistance located in
the community but champion its rightful place, at the very least,
as an equal contributor to the formation and transformation of
the next generation of service interventions.” (26)
I would argue that this process he visualised never materialised because of the stranglehold of Neoliberalism, the coming of the age of austerity, and the ideological collapse of the disabled people’s movement. The aspiration may still be there, but it has been severely blunted. What has unfolded over the last thirty years is also a major barrier for advancing any radical agenda; but I believe the tentative ideas found within the work of Davis, Finkelstein, and others, can still inform the praxis of disabled people and their allies in today’s struggle.
Just as Ken and Vic viewed ‘independent living’ as problematic due to mainstream meanings attached to it, and subsequent implications in terms of developing the type of services and society we want, I see similar issues with ‘integration’ and ‘integrated services’. My concerns could be dismissed as being semantic wordplay or using language in a faddish manner, but I would counter argue by suggesting that my concerns are material and based upon an understanding of the hegemonic power that lies in dominant ideological meanings attached to the concept of integration.
The emancipation struggle of disabled people by its very nature challenges the hegemonic power of both dominant ideas and practice. To have access to mainstream social activities has always been the core desire and goal of the disabled people’s movement; the issue as I have always indicated is how can this be achieved? Mike Oliver and I discussed the problematical issues around integration, inclusion and ‘equal opportunities for all’ in the late 1980s. This contributed to Mike writing the following in 1996:
The rediscovery of citizenship in the late twentieth century has not, however, resulted in a greater understanding of the processes which exclude some groups from the mainstream of social life, nor has it added substantially to their legal rights to be included. This lack of understanding extends, as I argued previously, to what integration means. The follow quote demonstrates the point:
If by integration you understand a breakthrough into able bodied
society by disabled people, an assimilation and acceptance of
disabled people into already established set of norms and code
of behaviour set up by the able bodied, then YES I am against it.
… If on the other hand by integration you mean there shall be
participation by all members of society, catering for the full
expression of the self in a freely changing society as determined
by people, then I am with you.
I have deliberately not referenced this quote because it did not come from a disabled person; in fact, my attention was originally drawn to the quote by Bob Fin[d]lay many years ago, and I adapted it ….” (27)
The original quote was from Steve Biko, and Mike swapped ‘disabled’ for ‘black’ and ‘able bodied’ for ‘white’. (28) The crucial point here is that ‘integration’ often does simply mean an assimilation into and acceptance into already established set of norms and code of behaviour, which is unacceptable, oppressive and often unworkable. We also agreed that ‘equal opportunities for all’ is idealistic within the current nature of capitalist society.
There is, of course, a second meaning given to integration within the quote. Steve Biko defines this as ‘there shall be participation by all members of society, catering for the full expression of the self in a freely changing society as determined by people’. This second view, in our opinion, fits into how Ken and Vic were using the concept. Mike, and I agreed, that we need to forge a new understanding; employing inclusion instead of integration in order to capture the alternative meaning offered by Ken, Vic and Steve.
Making this shift, of course, is not without its own problems and issues.
How is inclusion being articulated?
I have already stated the importance of providing context therefore I see the need to do this in relation to considering the strengths and weaknesses of employing ‘inclusion’ as a concept. It is always difficult to strike a balance between being honest as to what is required to produce meaningful social change and what is achievable at a specific moment in time. There is a danger that we can put the ‘bar’ for social change too high and in the process halt any progress towards our ultimate goal.
Alyx, a Staff Writer for the Afrikan Black Coalition in the USA wrote:
“Without revolution we cannot remove a traditionally oppressive government overnight, not when it took hundreds of years for this same government to establish and sustain its oligarchic systems with the goals of keeping a prototypical ‘elite class’ in place. ‘A system cannot fail those it was never meant to protect’ and it also won’t change for those it was designed to oppress.
So what is the balance between reform and revolution? I don’t know that there is a balance, I feel as if we need reform first to make room for revolution. While revolution is what we need, it can’t be done under the circumstances of a lack of unity or true consciousness. Then what is the tangible solution and what can the individual person in America do to change the system today, right now? There is no answer. The solution is as complex, if not more than the problem, and maybe this is a cop out – but my suggestions is to recognize that the system is broken, find your lane of change, exercise your vote locally and nationally, and ensure that what you’re doing is working towards making revolution possible.” (29)
What I take from what Alyx is saying is we need to create the conditions – make the room – whereby people can come together and develop a transformative agenda. Act 4 Inclusion, for example, came out of a campaign to address the crisis within Social Care. In the early days it simply saw the agenda as one of reversing the privatisation agenda and increasing resources. It was only through dialogue that we saw disabled people argue that the system was not simply broken, but in fact it was never fit-for-purpose in the first place and therefore trying to mend it was not really providing people with what they needed or wanted. To a certain degree, I see the discussion around the difference between integration and inclusion in a similar light.
In the first blog, I noted that integration within mainstream discourse was usually understood to be ‘a dynamic and principled process of promoting the values, relations and institutions that enable all people to participate in social, economic, cultural and political life on the basis of equality of rights, equity and dignity.’ As we have just seen in Oliver’s use of Biko, this notion of ‘integration’ can have two conflicting approaches and often than not the prominent approach is one of assimilation and acceptance of established set of norms and code of behaviour which ultimately results in disabled people facing unequal and differential treatment.
The alternative approach towards ‘integration’ as advocated by Biko sounds more like a form of ‘inclusivity’. I say a form of inclusivity because I believe inclusive practice can operate within either reformist or transformative agendas. The United Nations as we saw previously, sees inclusion as ‘a process by which efforts are made to ensure equal opportunities for all, regardless of their background, so that they can achieve their full potential in life. It is a multi-dimensional process aimed at creating conditions which enable full and active participation of every member of the society in all aspects of life, including civic, social, economic, and political activities, as well as participation in decision-making processes.’
Key to either reformist or transformative agendas is the idea that inclusion involves ‘creating conditions which enable full and active participation of every member of the society in all aspects of life’, therefore, the focus needs to be on how these conditions are created.
Before considering how disabled people and their allies have begun to develop their application of the notion of inclusive practice, let us reflect upon how inclusive practice is viewed within the mainstream. As indicated above, inclusion is seen as a universal human right. It is argued:
“The aim of inclusion is to embrace all people irrespective of race, gender, disability, medical or other need. It is about giving equal access and opportunities and getting rid of discrimination and intolerance (removal of barriers). It affects all aspects of public life.” (30)
This aim could, because of its breath, fit within the ICF framework, the
existing eco-social model of disability, and a myriad of current social models as well. It is largely reformist in nature as it counterposes ‘giving equal access and opportunities with getting rid of discrimination and intolerance; however, it still implies the current structures and systems can be made ‘nicer and fairer’. No activist should be opposed to seeking to improve services, living or working conditions; however, reforms and improvements alone will not change disabled people’s overall social situation. Social change more often than not is a means to an end rather than an end in itself. One way inclusive practice is seen as being operationalised is through the development of inclusive design. It is in this area where I believe disabled people and their allies can have in the short to medium term challenging impact upon the status quo. Campaigning for a radical inclusivity programme employing an eco-social approach lays the basis for a new system that can create community based services. It is argued that:
“Inclusive design is about making places that everyone can use. The way places are designed affects our ability to move, see, hear and communicate effectively.
Inclusive design aims to remove the barriers that create undue effort and separation. It enables everyone to participate equally, confidently and independently in everyday activities.” (31)
In the above context, inclusive design, is about buildings and environments. I believe the principles of inclusive design can be extended to include systems and structures. The development of an eco-social approach is about addressing the interconnectedness, both in a positive and negative ways, of systems and structures. My reading of both Ken’s and Vic’s work is that their understanding of ‘integrated living’ corresponds to my notion of inclusive living and the development of power-sharing through coproduction. I have deliberately not included a critique of ‘coproduction’ in this series of blogs because it is a method of working rather than a goal, however, I acknowledge coproduction is a political area of debate. It is a contested concept and we have witnessed forms of coproduction employed within Neoliberal social policy and practice however, this alone should not deter us from having a dialogue around developing progressive versions of coproduction. (32)
Ken’s critique of existing modes of ‘independent living’ needs to be part of the dialogue as well, The elephant in the room is how capitalism links power, choice and control with both individualism and the idea of self-reliance. Extending choice and control to the users of publicly funded services was a cornerstone in the personalisation agenda. It was assumed that giving service users greater choice and control will promote users’ independence. Disabled people and their allies are often divided on how successful this assumption has proved to be. These are massive social and political issues which split the disabled people’s movement during the 1990s and they remain problematic today.
There is more than one reason why this situation occurred, however, in the context of the blogs I have written, I would argue as a result of following the narrow ‘rights agenda’ and consequently the drift towards accommodational politics, the disabled people’s movement failed to politically address the introduction of the Care in the Community policy introduced in 1990. Once again, I believe Vic explains why inclusive living ought to be pitched as the way forward:
“‘Care in the community’, as a policy philosophy, is firmly rooted in able-bodied assumptions about disability. A person with an impairment may need care, and disabled people, too, can have impairments of body and mind. But what disabled people need, just like their able-bodied peers, is community based support systems . For able-bodied people this takes the form of public utilities – like the electricity supply service, postal service, etc., and of course, public transport. These utilities have emerged in the course of a long history involving the struggle of human beings to control and mould the world according to their lifestyles, culture, etc. Disabled people, until very recently, have had no say, interpretation or impact on what this world might be when constructed from the perspective of our lives and culture.” (33)
The above quotation needs to be understood in terms of how community care reforms worked against the interests of disabled and older people.
The community care reforms outlined in the 1990 Act came into effect in April 1993. Hadley and Clough (1996) claim the reforms ‘have created care in chaos’, and that the reforms have been inefficient, unresponsive, and have offered no choice or equity. Means and Smith (1998) also claim that the reforms:
introduced a system that is no better than the previous more bureaucratic systems of resource allocation
were an excellent idea, but received little understanding or commitment from social services as the lead agency in community care
the enthusiasm of local authorities was undermined by vested professional interests, or the service legacy of the last forty years
health services and social services workers have not worked well together and there have been few ‘multidisciplinary’ assessments carried out
in reality little collaboration took place except at senior management level
the reforms have been undermined by chronic underfunding by central government
the voluntary sector was the main beneficiary of this attempt to develop a “mixed economy of care” (34)
Very little has changed since the 1990s and the central focus has always been on personal support. As previously stated, disabled people have differing opinions on the ways Direct Payments operate. In my opinion, they fail to break with an individualistic approach which does not address the oppressive system as a whole.
I believe adopting a radical approach towards inclusive practice would enable us to challenge the existing practice and thinking surrounding service delivery within the Social Care system. Currently, there are a thousand and one takes on what needs doing to change or improve the system however the majority centre upon the delivery of personal care.
A glance at how the Trade Union Congress sees what needs undertaking compared to Reclaiming Our Futures Alliance’s outline for a National Independent Living Service (NILS), sees both similarities and huge difference. (35)
In 2019 the TUC published an article by Kam Gill which argued solutions to the social care crisis require a rethink in three key areas:
Rethinking Commissioning
Rethinking industrial strategy
Rethinking funding
At no time does Gill question the nature of the system or consider the needs and interests of those who require social support. Gill treats older and disabled people as simply passive recipients of ‘caring services’. Hence the TUC and Labour are calling for a National Care Service. (36) Mark Harrison and Peter Beresford’s SOCIAL CARE IS BROKEN BEYOND REPAIR – SO WHAT SHOULD REPLACE IT, makes the case for a National Independent Living Service. They write:
“So we are proposing to co-create a new universal right to independent living, enshrined in law and delivered through a new national independent living service managed by central government, led by disabled people, but delivered locally.
This local service will be shaped and delivered by user-led disabled people’s organisations, co-operatives and social enterprises. It will be for need not profit and will not be means tested. It will be independent of, but sit alongside, the NHS and will be funded from direct taxation. There is a much bigger job to do in helping the NHS move to adopting a social model of disability, distress and ageing. It will also demand an end to current discriminatory and cruel approaches to ‘welfare reform’ and instead advocate a new independent living based approach.
It will be about independent living in the broadest sense, not just social care and health. It will therefore need to be located in a cross-government body which can oversee implementation plans, whether it be in transport, education, housing, or social security.” (37)
Aspects of this proposal share common ground with A4I’s but there are major differences as well. I would argue Harrison and Beresford offer a muddled vision which refers to a social approach towards disability, but at the same time undermines the radical social model. They wrote:
“The social care element will need to have its own identity in a national independent living service. This will build on and learn the lessons from the Independent Living Fund, closed by the Coalition government in 2015. It will also learn from the experiences of user-led disabled people’s organisations (DPOs), user-led social enterprises and co-ops which have innovated and developed exciting models of self-organised and self-directed care through personal budgets and peer support. It will work with non-disabled allies who share the critique of the existing system and who work to the social models of disability and distress.” (38)
In my opinion this is repeating some of the mistakes Finkelstein criticised. I am in favour of a radical National Independent Living Service, but with the clear understanding that:
“Elevating ‘independent living’ into a principal (rather than seeing it as an element within a model) in my view avoids in-depth debates about campaigning aims – for example: should we aim at the right (civil rights law) to be independent (independent living services) or should it be for the nationalisation of appropriate social services under our control (integrated living services)?
It, surely, is only by emphasising that ‘rights’ and ‘independent
living’ are no more than ‘components’ of the social model of
disability that makes clarity in the dynamics of our quest
possible.” (39)
I totally agree with Vic, and I will keep pushing for the type of debates he saw as necessary. There is an urgent need to consider how the developing of inclusive practice, that is addressing how to facilitate people’s engagement in mainstream social activities, would feed into creating a new eco-social system capable of delivering community based services, sits in relation to the proposal for ‘integrated living services’. What are the differences and similarities?
Understanding the transformative nature of the eco-social approach
By arguing for an eco-social approach to system change, we are not abandoning the foundations of the emancipation struggle of disabled people but instead, it is building upon them. Social ecology has to be viewed as an additional component of the radical interpretation of disability. An eco-social approach to system change would employ inclusive practice through adopting coproduction within design, planning and implementation of service delivery. Sharing the power at national and local levels of society would be a progressive way to exercise choice and control. Our ability to construct an inclusive society turns on how to feasible it will be to transform social relations. To end disabled people’s social oppression requires us to address their ‘unequal and differential treatment’ and this cannot be done in isolation. Perhaps at a pollical rather than at a social level, there is a difference between what disabled people really want and what they actually need. This said, I believe the debate over what disabled people really want, can only be concluded when the majority of society acknowledges:
“The allying of service development with community-based aspirations requires substantially different worker attitudes and guidelines for providing professional assistance. Setting up CIL services transforms the way disabled people think about themselves and the public identity they wish to cultivate. In my view this is the beginning of a journey in which a whole new cultural matrix of human relationships is waiting to
be discovered.” (40)
The last twenty five years have seen a reverse in providing ‘what disabled people really want’, therefore these words are as true as when they were first written.
“It is still at the earliest stage of speculation to consider what will be the future of services for disabled people when informed by the social model of disability. This is when the untravelled road from fantasy to reality is at its most confusing and daunting but, nevertheless, challenging, stimulating and exciting.” (41)
I was drawn into disability politics through reading Apart by F. J. Miller and G. V. Gwynne and speaking with Paul Hunt, therefore I will end this blog on a positive note by quoting Paul:
“What seems to me undeniable is that one of the factors in any progress towards a better society is the willingness of people to take theoretical and practical ‘leaps’ which sceptical common sense regards as unrealistic and idealistic. This is not to say that hard thinking, painstaking research and cautious experiment are not indispensable. The point is that they become sterile without imaginative vision and commitment.” (42)
Notes
1. Davis, K. (1984) NOTES ON THE DEVELOPMENT OF THE
DERBYSHIRE CENTRE FOR INTEGRATED LIVING (DCIL) page 1
2. Millington, P.; Wood. H. (2010) Forward: The History of Birmingham Disability Resource Centre, Birmingham: BDRG
3. Davis, K. (1984) page 11
4. Davis, K. (1984) page 1
5. Davis, K. (1984) page 2
6. Williams-Findlay, B. Human Rights Laws and anti-discrimination legislation: part of the struggle and part of the solution? https://www.inclusionlondon.org.uk/campaigns-and-policy/act-now/human-rights-laws-anti-discrimination-legislation-part-struggle-part-solution/
7. Davis, K. (1984) page 2
8. Finkelstein, V. (2007) The ‘Social Model of Disability’ and the Disability Movement, page 10
24. Vislie , L. (2003) From integration to inclusion: focusing global trends and changes in the western European societies, European Journal of Special Needs Education, Vol. 18, No. 1 (2003), pp. 17–35, page 18
25. Finkelstein, V. (1998) page 26
26. Finkelstein, V. (1998) page 26
27. Oliver, M. (1996) UNDERSTANDING DISABILITY: FROM THEORY TO PRATICE, Macmillan Education UK, page 92
28. Biko, S. (1978) I Write What I Like, Harmondsworth, Penguin
29. Afrikan Black Coalition (2016) Finding the Balance Between Reform and Revolution
41. Finkelstein, V. and Stuart, O. (1996) Developing New Services. Hales, G. (ed) (1996) Beyond Disability: Towards an Enabling Society. Sage.
42. Paul Hunt (1972) Parasite People. Cheshire Smile (Autumn 1972) Vol. 18 (3). A critique of A Life Apart by F. J. Miller and G. V. Gwynne. Tavistock Publications and Lippincott. 1972.
This post represents the thoughts of our Engagement Officer, Bob Williams-Findlay. It is posted here to stimulate thought and debate amongst members of our community, so we would welcome your contributions. It is a personal opinion, and does not necessarily reflect the official position of Act for Inclusion.
In the first blog in the series, I explained the purpose behind doing them. The blog sought to outline key concepts discussed at a members’ meeting of the campaign organisation Act 4 Inclusion (A4I) and consider some of the complexities involved in employing them.
Within this blog I wish to explore how disability and integration have been historically viewed within the struggle for disabled people’s emancipation. From this enquiry, I wish to argue that the notion of ‘inclusivity’ can, if applied in a radical manner, mount a challenge to disablism that has been lost in the discourses around ‘integration’; however, it will also be asserted that this can be a means to an end, not an end in itself. (1) Woven into the discussion will be the promotion of the view that it is impossible to deliver what disabled people really want without constructing a truly transformative agenda.
It will be argued that by exploring the ideas of Vic Finkelstein and Derbyshire Centre for Integrated Living, alongside the A4I Vision, it will be possible to start to construct a transformative agenda. (2) The direction of travel being followed will be uncomfortable because it require us to interrogate deeply held ‘truths’ from within the disabled people’s movement.
Historical context: disability and integration within the struggle for emancipation
Most politically conscious disabled people have an understanding of the basic arguments that stem from the social interpretation of disability: that is, the exclusion from and marginalisation within mainstream social activity, is caused by the structures and organisation of society. Our experience of oppression and discrimination are the outcome of how we are seen and treated. It should go without saying that we want to change this situation, however, the tricky question is: how do we undertake this task?
In the presentation delivered to the members’ meeting, it was suggested that to be able to achieve A4I’s vision there was a need to develop an eco-social approach towards a new system of support which has its foundations rooted in the Social Model of disability and the disabled people’s independent living movement, but also with the added responsibility to understand and incorporate natural ecosystems into our way forward for social support.
With hindsight, I recognise that talking about the ideas rooted in the independent living movement could be misleading because, as I will explain in a while, there are political and ideological differences among disabled people in terms of what it is we are seeking to achieve. These differences are evident in the approaches taken by disabled people regarding independent living. In the early days of the disabled people’s movement the discussions around integration took place with a greater emphasis on the political priority of escaping segregated living. I have decided to drill down further into how social integration was seen by specific tendencies within the movement and provide some historical context. By doing this, I believe I can show commonality and differences with the thinking going on within A4I. It should be noted that the political and ideological differences that exist among disabled people extend into the ranks of disabled activists who adopt the radical social approach and I will be highlighting some of these differences in due course.
From its beginning, the modern disabled people’s movement had a dual purpose. UPIAS wrote for example:
“The Union aims to have all segregated facilities for physically impaired people replaced by arrangements for us to participate fully in society. These arrangements must include the necessary financial, medical, technical, educational and other help required from the State to enable us to gain the maximum possible independence in daily living activities, to achieve mobility, to undertake productive work, and to live where and how we choose with full control over our lives.” (3)
They sought to end the unnecessary incarceration of older and disabled people, whilst seeking support to undertake independent living. Was this realistic? As I see it, this was a challenge to the state and society. The word ‘independence’ refers to the right to control one’s life and not be subjected to segregated, dependency-making “care”. I see the social interpretation of disability as a platform for developing what I call ‘transitional demands’.
In Marxist theory, a transitional demand either is a partial realisation of a maximum demand after revolution or an agitational demand made by a socialist organisation with the aim of linking the current situation to progress towards their goal of a socialist society. I believe the latter meaning can also be applied to how the early disabled activists articulated what they wanted.
UPIAS forward this argument:
“The cruelty, petty humiliation, and physical and mental deprivation
suffered in residential institutions, where isolation and segregation have been carried to extremes, lays bare the essentially oppressive relations of this society with its physically impaired members. As in most similar places, such as special schools, there are some staff and volunteers doing their best to help the residents. But their efforts are systematically overwhelmed by the basic function of segregated institutions, which is to look after batches of disabled people – and in the process convince them that they cannot realistically expect to participate fully in society and earn a good living.
This function was generally appropriate when special residential institutions first came into being, since in the competitive conditions of the time many physically impaired people could not even survive without their help. But now it has become increasingly possible for severely impaired people not just to survive, but also to work and become fully integrated, the need for segregated institutions no longer exists in the way it did. They have become seriously out of step with the changed social and technological conditions of Britain today.” (4)
I believe there’s a flaw in this argument and it has plagued disability politics ever since. Marta Russell in this long quotation both supports UPIAS’ assertion, but at the same time signposts to the flawed aspect of their argument.
She wrote:
“Our institutions (particularly medical and social welfare institutions) have historically held disablement to be an individual problem, not the result of economic or social forces. They have equated disability with physiological, anatomical, or mental “defects” and hegemonically held these conditions responsible for the disabled person’s lack of full participation in the economic life of our society. This approach presumed a biological inferiority of disabled persons. Pathologizing characteristics such as blindness, deafness, and physical and mental impairments that have naturally appeared in the human race throughout history became a means of social control that has relegated disabled persons to isolation and exclusion from society. By placing the focus on curing the so-called abnormality and segregating the incurables into the administrative category of disabled, medicine bolstered the capitalist business interest to shove less exploitable workers with impairments out of the workforce.” (5)
The medicalisation of the body fed into the dominant ideologies that were to shape how disabled people were seen, but it also legitimated their treatment. Individualism and the contours around ‘normality’ were also part of this process of shaping the exclusion of disabled people.
Russell went onto say:
“This exclusion was rationalized by Social Darwinists, who used biology to argue that heredity (race and disability status) prevailed over the class and economic issues raised by Marx and others. Just as the inferior weren’t meant to survive in nature, they weren’t meant to survive in a competitive society. For 19th century tycoons, Social Darwinism proved a marvellous rationale for leaving the surplus population to die in poverty. Capitalism set up production dynamics that devalued less exploitable or non-exploitable bodies, and Social Darwinism theorized their disposability. If it was natural that disabled persons were not to survive, then the capitalist class was off the hook to design a more equitable economic system – one that would accommodate the body that did not conform to the standard worker body driven to labor for owning-class profit.” (6)
Here is the rub then, ‘the capitalist class was off the hook to design a more equitable economic system – one that would accommodate the body that did not conform to the standard worker body driven to labor for owning-class profit’. The point I am trying to make here is that the social relations disabled people have within capitalist societies are determined by various factors and there is a complexity that has been underplayed within disability politics and progressive movements. What is rarely openly discussed is the relationship between ‘the essentially oppressive relations of this society with primarily its physically impaired members’ in relation to the class struggle. I believe it is implicit within the social interpretation of disability, however, I also believe what should be understood as the dialectics of disability have been underplayed.
In the final blog of this series, I will discuss in more detail what I believe constitutes the dialectics of disability and why they should be situated within the context of employing dialectical materialism. Within Marxist theory it is argued that political and historical events result from the conflict of social forces and are interpretable as a series of contradictions and their solutions. In the blog, I will touch upon why I believe both dialectical and historical materialism offer us a method to develop a theory of disability as oppression and act as a contribution within disabled people’s emancipation struggle. (7)
The first phase of disability politics was developed primarily by physically impaired people who had been institutionalised. They recognised other groups were subjected to oppression which had roots in the same sets of social relations they had, but they did not explore the implications. (8) Vic Finkelstein and Mike Oliver were always clear:
“….a social model of disability should assist us in gaining insight into the disabling nature of the market system.” (9)
This is not, in my opinion, how today’s disability politics employ a social model of disability. Before exploring this view of mine, let us go back once more to the roots of our two movements and consider similarities and differences.
As previously stated, UPIAS was made up of people considered to be ‘physically impaired’, that is, having bodies that displayed ‘functional loss’. The usual definition of ‘functional loss’ is that it is the inability to perform standard working movements of the body with the expected excursion, strength, speed, coordination and/or endurance. What is contested however is the social construction of ‘impairment’ which is a problematical area of debate I wish to sidestep to a degree here, however, it cannot be ignored altogether. (10) UPIAS never denied the fact impairment reality existed or could be denied as a determining factor in the encountering of disablement, but what they challenged was the view that impairment reality was the direct cause of disabled people’s social exclusion and marginalisation. Thus:
“Our own position on disability is quite clear; and is fully in line with the agreed principles. In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society. It follows from this analysis that having low incomes, for example, is only one aspect of our oppression. It is a
consequence of our isolation and segregation, in every area of life, such as education, work, mobility, housing, etc. Poverty is one symptom of our oppression, but it is not the cause. For us as disabled people it is absolutely vital that we get this question of the cause of disability quite straight, because, on the answer depends the crucial matter of where we direct our main energies in the struggle for change. We shall clearly get nowhere if our efforts are chiefly directed not at the cause of our
oppression, but instead at one of the symptoms.” (11)
The roots of the social interpretation of disability come via responding to how society both ‘sees and treats’ people with significant physical impairments. It is the appraisal of bodies considered to be ‘impaired’ and the subsequent treatment of them which lies at the heart of the oppression disabled people encounter. Whilst what constitutes ‘impairment’ is an issue to be discussed, it is not central to the core argument forwarded by UPIAS because no matter what ‘definition’ is “accepted”, the baseline is how a given society socially constructs its meaning and the consequences that flow from this. The framing of impairment in terms of functional incapacity leads to certain groups being subjected to ‘unequal and differential treatment’. Unless an ‘impairment’ is deemed present, the individual would not find themselves assessed as to whether they should be considered ‘disabled’ or not.
Negative interactions between disabled people and a raft of environments, produce disabling situations; however, these interactions have two sides to them. The dialectic nature of disability involves addressing the relations that are seen to exist between impaired bodies and social environments. Hence Paul Abberley argued:
“It is crucial that a theory of disability as oppression comes to grips with this `real’ inferiority, since it forms a bedrock upon which justificatory oppressive theories are based and, psychologically, an immense impediment to the development of political consciousness amongst disabled people. Such a development is systematically blocked through the naturalisation of impairment.” (12)
The question of the assumed naturalisation of impairment has been inadequately addressed by those who developed the social interpretation of disability because in the beginning it was thought that all that was required was to see ‘impairment’ as a given, and from this stance, break the causal link between impairment and disability. (13) The lack of explanation of the dialectical nature of the relations between impairment and disability have had negative consequences for disabled people’s emancipation struggle. It for this reason, I want to particularly focus upon the second point Paul makes about our ‘disadvantages are dialectically related to an ideology or group of ideologies which justify and perpetuate the situation.’ What does this mean?
The development of dominant ideologies and practices in relation to disabled people did not come from out of thin air. At the heart of disabled people’s emancipation struggle, in my view, is the conflict between the needs of capital versus the needs of disabled people. This conflict however throws up a series of contradictions not least of which is the expressed desire found within disability politics to be part of existing social relations; that is, to participate in mainstream social activities, when there is little motivation to accommodate those viewed as lacking social worth due to having ‘inferior bodies’ (sic).
Taken at face value, I remain unconvinced that true emancipation in the form of either ‘inclusion’ or ‘integration’ is fully achievable under Capitalism. I do however believe it is possible to seek betterment by fighting for inclusive practices; whereas social integration as it is currently spoken as being ‘full participation’, on the other hand, I view as neither feasible nor desirable within existing social relations. UPIAS placed an emphasis upon obtaining access to employment because it granted a certain degree of financial autonomy and increased social worth; whilst undoubtedly true, what is glossed over is the nature of the world of work, its exploitative and dehumanising features. The ability of disabled people to obtain access to employment turns on the type of interaction that is possible between impaired individuals and working environments. Factors, for example, such as accommodation (inclusive practice) and the needs of market forces will always be struggled over within capitalism.
The idea of betterment therefore acknowledges that we can take steps to improve given situations, for example, fighting for an end of enforced segregation or institutionalisation; but nonetheless within a wider strategy of seeking to transform the entire system.
Disability politics have been bedevilled by endless debates relating to concepts and language. Language is complex as ‘words’ often have different meanings and usage. Gramsci, as an example, wrote about how hegemonic power of ruling groups can absorb radical concepts by emptying them of their original meaning and inserting ideas that embrace the status quo. We saw New Labour do this with ‘Personalisation’ which corrupted Independent Living and person-centred planning. (14)
What this led to is a situation where today there are disabled people who want to “buy” their way into society by being “employers” of ‘personal assistants’. Rather than transform society and promote collective ways of developing community based services using coproduction and inclusive practice, we have seen disabled people collude with their oppressors by trading in their politics and principles for a piece of action within the capitalist marketplace. I have spoken about this elsewhere. (15) I know this sounds harsh, and I believe this situation has emerged for a number of reasons, but the adoption of this type of individualised solution has had a detrimental impact upon disabled people’s ability to struggle for an inclusive society. A major factor is the nature of disabled people’s oppression and the hegemonic hold of dominant ideology.
As a former planning officer within Social Services, I understand the attraction of ‘direct payments’ as the traditional services were/are not fit-for-purpose. But this ‘attraction’ masks the oppressive nature of NHS and Social Care direct payment systems and the exploitative ways disabled people and PAs are governed by market forces. I hate seeing the painful way individuals are being set up to fail.
I recall what Vic wrote:
“The promoters of ‘independent living’ in a market economy can’t complain that they get what they wanted (to the delight of privateers in the new Blatcherite Labour Party). When disability groups became ‘independent’ they needed to get on with the job and compete against other ‘independent living’ service providers. If the competition happens to be well-established charities – well so be it – let the most competitive win! That’s what ‘independence’ means in the capitalist system. It’s all
about ‘efficient’ service provision (meaning who has the cheapest product to sell). The market has no need for non-productive groups such as ‘political’ organisations of disabled people.” (16)
What he is referring to is what I regard to be the second phase of disability politics. It was where ‘Janus politics’ were developed and led to the abandonment of the radical social interpretation of disability in favour of a more accommodational approach. As just stated, there are many root causes for this shift, but I want to highlight just a few of them that are relevant to this discussion. The shift from the first to second phase coincides with the development of a new social movement.
Batliwala (2010) stated in relation to how social movements shape collective power:
“Processes that build the collective power of an organised constituency of excluded, marginalised, oppressed or invisible people, around a change agenda that enables them to access the full body of human rights, challenge the distribution of wealth and control of resources, challenge dominant ideologies, and transform social power relations in their favour.” (17)
What is significant here is the emphasis that Batliwala puts on the processes involved in forging ‘collective power’ to enable social movements to mount challenges around change agendas. Oliver and Barnes suggest the British movement did engage in challenges of this nature, however, towards the end of a section on social movements in their book, they write:
“Overall, the disabled people’s movement has utilized both radical and conventional politics. The balance between the two has varied historically; currently those committed to wide-ranging social change have lost ground to those supporting political involvement in the established institutions and trying to break down disabling barriers from within the system.”
They however go on to say, “Of course, there is no ‘royal road’ to ‘independent living’ or ‘empowerment’, and no user’s manual, overarching set of political tactics or universally applicable form of self-organisation; nor can there be.” (18)
Across the globe it is true that the emancipation struggle of disabled people will take a variety of forms due to differing economic and social conditions, and therefore disability politics cannot be totally ‘universal’ in their nature as they must relate to material conditions and situations; however, there is an additional point. The considerable variations in political analysis and strategies among disabled people nonetheless have to be viewed in context because differing political and ideological positions have significant implications for the development of disabled people’s emancipation struggle.
It is necessary to consider the possible implications of there being considerable variations in political analysis and strategies among disabled people as it ties into how we understand ‘what disabled people want’. In simple terms, the 1970s saw disability politics primarily focus on the location of physically impaired people. It was a movement to push against institutionalisation and segregation; it was argued, as we saw, that disabled people could be supported to live in the community, secure employment and contribute to mainstream social activities. It was a call for ‘integration’ into society.
Two important observations need to be made:
Disabled people want to be integrated/included in the mainstream of a society that does not respond to their needs and interests
Disabled people want their impairment reality taken into account, but the radical social interpretation of disability rejects the causal link between impairment and encountered social disadvantage (disability)
Colin Barnes in 2004 makes a very telling point when he wrote:
“Due largely to the intensifying politicisation of disability by disabled people and their organisations during the 1980s and 90s, both in the UK and elsewhere, the phrase ‘independent Living’ has been increasingly evident in policy documents produced by health and social service professionals in the context of ‘community care’ services for disabled people. Usually focusing on professionally led assessments of functional ability and inability, these initiatives bear little resemblance to the principles and practices of the international disabled people’s movement.” (19)
The corruption of the concepts from the disabled people’s movement is something I have written about in a variety of spaces. I have noted a number of paradoxical situations emerging from the late 1980s onwards. Barnes mentions the intensifying politicisation of disability, which is undoubtedly true, however, it was not necessary undertaken in a comprehensive manner due to both the political terrain at the time and the nature of the disabled people’s movement as a social movement. Finkelstein made this observation:
“The result is that Mike and Colin do not offer a single interpretation of what happened in the 1990s structures of society, ‘outside’ there, which facilitated the rising dominance of the ‘rights based approach’ in the disability movement, ‘inside’ here. Far from making a credible criticism of the disability movement’s misleading over-emphasis on ‘civil rights’ they adopt the same ‘inside out’ approach in their analysis!” (20)
I take my share of criticism for supporting an over-emphasis on ‘civil rights’ however I believe I did raise a critical voice within the movement. I did, and I continue to argue, that disabled people need to adopt a methodology which explores ‘out there’ as a crucial part of furthering the struggle. In coining the phrase, ‘Janus politics’, I was describing the tendency to look back in order to ‘borrow’ the language and concepts from the radical interpretation of disability, but in taking them forward their original meanings were ditched for ones which served the status quo.
I wrote:
“It is necessary to question the extent to which direct payments, independent living and now personalisation have the dynamic meaning of disability as understood by Finkelstein and UPIAS. What we have seen is a set of accommodating ‘interpretations’ employed by more liberal and reformist disabled activists and sections of the disabled community, which in turn has allowed service providers and the state to exploit this situation.” (21)
From the mid-1980s we can see a proliferation of self-organisations of disabled people which were not impairment specific. The British Council of Organisations of Disabled People grew in a decade from fifteen to a hundred and twenty organisations before its decline. This was the height of the disability/disabled people’s movement. (22) The expansion of self-organisation was supplemented by the popularisation of the social model of disability primarily through Disability Equality Training. Elsewhere I have offered a critique of the growth of this new social movement and its implications. (23)
There were a number of social, ideological and political shifts over this period. The focus shifted from deinstitutionalisation and being an emancipation struggle to one that centred upon independent living and securing civil and human rights. Finkelstein expressed his criticism when he wrote:
“In the 1990s Mike Oliver’s view, on the other hand, was and
has remained, that the ‘social model of disability’ and ‘civil
rights’, alongside with ‘independent living’ are harmonious
components in our struggle for emancipation.
‘In the last 30 years we have begun to shake off the dead hand
of charity … In so doing we have built a political and social
movement that does offer us the very real possibility of
“changing our futures” …’ (Campbell and Oliver 1996). Mike
maintains that these advances were founded on three big
ideas: “the social model of disability, independent living and
civil rights”.
I don’t agree. I don’t see how ‘components’ of a model can be
given equal value to the model itself!” (24)
As I stated in the previous blog, I agree with this point of view because as he went onto explain, the de-coupling of ‘components’ or aspects of the radical analysis, led to weakening the argument for radical social change. I have argued that the demise of the disabled people’s movement turned upon this issue:
“In fact the radical social model of disability gave us the words to describe the way society is constructed so that we become disabled. It was an outside-in approach to our situation; words to describe our experiences of inequality is an inside-out approach (i.e. a case file approach). The former is a materialist approach and the latter an idealist approach. The idealist approach is perfectly at home with the ‘rights’ approach that is increasingly dominating the British disability movement and characterises the USA movement.” (25)
I believe the article by Francis Hasler in 2003, Philosophy of Independent Living, demonstrates the muddled thinking that resulted from the gradual shift in thinking and practice from the 1990s onwards. I quote at length:
“European Network on Independent Living, focus on personal assistance as a key component of independent living. This is because lack of personal assistance is so closely linked to being forced to live in institutional care. ENIL was set up in 1989 at a conference in Strasbourg. This conference resolutions says:
‘This conference has focused on Personal Assistant Services as an essential factor of Independent Living, which itself encompasses the whole area of human activities, e.g. housing, transport, access, education, employment, economic security and political influence.
We, disabled people, recognising our unique expertise, derived from our experience, must take the initiative in the planning of policies that directly affect us.
To this end we condemn segregation and institutionalisation, which are direct violations of our human rights, and consider that governments must pass legislation that protects the human rights of disabled people, including equalisation of opportunities.
We firmly uphold our basic human right to full and equal participation in society as enshrined in the UN Universal Declaration of Human Rights (extended to include disabled people in 1985) and consider that a key prerequisite to this civil right is through Independent Living and the provision of support services such as personal assistance services for those who need them.’
This resolution locates independent living firmly within the framework of human rights. This is not about doing good to disabled people, or providing them with welfare, it is about ensuring that disabled people can exercise their human and civil rights, equally with non-disabled people. The Strasbourg resolution expresses independent living philosophy in a form that can be understood by governments. Its stress on human rights also expresses another facet of independent living: all human life is of value. It does not matter what sort of impairment you have. No-one is so impaired that their life does not count. In expressing this aspect of our philosophy in concrete form independent living movement has had to battle the way in which social welfare services divide and classify disabled people. In the UK, for example, people with intellectual impairments are classified as having ‘mild or moderate or severe’ learning difficulties. Assumptions are made about what a person with severe difficulties can or cannot do, and they are rarely offered the opportunity for independent living.” (26)
To move forward, I believe disabled people need to clarify exactly what it is that they want. Attempting to unpack Francis’ article might prove a useful exercise. This said, we need to place such an exercise within the context of how the idealist approach derailed the Movement as a whole.
In 2004, Andy Rickell, Director of the British Council of Disabled People, wrote:
“Basic rights are specifically emphasised in disabled people’s terms including those of life, freedom of movement (including an end to institutionalised forms of provision for disabled people), social and political participation including self-organisation, independent living, sexuality, choice and control over our own lives, bringing up our own children, privacy and freedom from media intrusion, to express an opinion and to be heard, independent advocacy (including legal representation), and freedom from disablist humour and behaviour.” (27)
There is nothing here to disagree with, however, it was presented as a hotchpotch of ‘basic demands’ which are in fact a mixture of civil and human rights. The collapsing of the two types of ‘rights’ together does have serious implications in general, and specifically for our understanding of disablement and the development of disabled people’s emancipation struggle. Human Rights are some basic rights that should be given to every human being in the country, whereas main aim of civil rights is to give personal rights to an individual. Civil rights protect individual citizens from discrimination and grant certain freedoms like free speech, due process, equal protection, the right against self-incrimination, and so forth.
This is why the Disabled People’s Movement got in a muddle in the late 1980s and early 1990s because it demanded anti-discrimination legislation, but thought it could address disablement, seen simply as ‘institutional discrimination’, at the same time. Marie Barile outlines the impact of disablement when she wrote:
“Inequity occurs when the social structures and spaces, social norms, culture and the tools of social interaction are constructed without taking differences, and therefore, equity, into account. Inequity, or the application of uniform standards, results is a singleton society built on the premise that everyone is the same and that those who are not must either learn to live within the structure established for the majority or perish.” (28)
This is why issues around understanding the nature of disablement, the impact of disablism, have a direct bearing upon how integration and inclusion are understood. As I have said before elsewhere, Finkelstein hit the nail on the head when he said:
“The ideological problem facing the ….movement….from the 1990s onwards was whether the social model ….was still relevant in guiding our struggle or whether social changes had advanced so far that the original model no longer reflected the social context in which it had been created? Is the ‘rights’, or ‘potpourri’, model of disability now more in tune with the market economy expanding into the health and social services sector of society? Was the social model….really understood?” (29)
The reason I have spent so much time and space on ‘how did we reach where we are today?’, is that I believe that it is impossible to move forward without having a firm grasp of where we have been. The work of A4I, ROFA and other bodies is hampered by the fact that few disabled people, especially the activists, have a clear radical vision for the future.
What we see is a fragmentation of disability politics and an array of interpretations linked to concepts. The counter-hegemonic power of the social interpretation or Social Model has been dissipated for the reasons outlined above. The demand for “rights” therefore masks the myriad of ‘meanings’ that lie behind this call. How then do we move forward, seek clarity, and determine what disabled people really want?
It might not be possible to put Humpty Dumpty back together again or sensible to attempt square the circle, however I believe the journey A4I and others want to make is worth setting out on. As Finkelstein implied, we are charged with the task of understanding how all the components of a social approach towards disability fit together to inform disabled people’s emancipation struggle. The ideological questions surrounding the debates on developing ‘integrated’, ‘independent’ or even ‘interdependent’ living, influence how we define the various concepts involved. By exploring disabled people’s social situation we may be in a better position to advance our journey.
It is these ideological questions that I will focus upon in the third blog.
Notes
Northway, R. (2002) ‘Integration and Inclusion: Illusion or Progress in Services for Disabled People?’ Social Policy & Administration, Volume 31, Issue 2 pages 157-172
2. Finkelstein, V. (1999) Professions Allied to the Community (PACs) I
22. Figures from a speech made at the National Disabled People’s Summit held on Saturday (4th November 2017) organised by the National Education Union, Reclaiming our Futures Alliance (ROFA) and Disabled People Against Cuts (DPAC).
28. Barile, M. (2003) ‘Globalization and ICF Eugenics: Historical coincidence or connection? The More Things Change the More They Stay the Same’, Disability Studies Quarterly, Spring, Vol. 23, No. 2, pp. 208-223, http://www.cds.hawaii.edu/dsq.
This is a comment piece by our Engagement Officer, Bob Williams-Findlay. It represents his personal opinion, and is presented here for discussion. It does not necessarily represent official A4I policy. We actively welcome comments and discussion on the content of this article.
Part 1
The purpose of doing a series of blogs on the subject of ‘Integration, Inclusion or Transformation: What do disabled people really want?’ is to develop the initial comments I made in mid-November in a post on my Facebook page. When asking this question I am focused on addressing what disabled people might seek to achieve as an outcome of their ‘emancipation’ struggle. In 2018 it was reported that:
“Nearly half of disabled people feel excluded from society and day to day life, according to a new report by disability charity Scope.” (1)
While the survey was relatively small, the opinions expressed have been fairly standard over the last forty years. The last decade has been particularly harsh with Austerity cuts, a growing crisis within Adult Social Care, and the weakening of the Independent Living Movement. How then do disabled people see the task of changing their social situation; it is campaigning for integration, inclusion or transformation?
My original post arose as a result of an interesting discussion that took place in a members’ meeting of the campaign organisation, Act 4 Inclusion (A4I). (2) Out of respect to A4I and its members, I am not going to reveal the discussions that took place in their meeting beyond acknowledging that there was a diversity of opinion surrounding people’s interpretations of what integration and inclusion means. A discussion took place as a result of a presentation which sought to give further thought to a set of new concepts introduced into the organisation at its 2021 Annual General Meeting. It is not my intention in this series of blogs to discuss in detail all the concepts employed by A4I because I want to focus upon the central question. One of the reasons behind this decision is the fact that all the concepts employed in the A4I Vision can be contested both in terms of meaning and application.
In May 2021 the organisation previously known as Reclaim Social Care changed its name, but it also adopted a new vision and strategy. A4I is not a disabled people’s led organisation, but it is working in that direction by working in coproduction with non-disabled allies to campaign for the development of a new national service delivering community based services via an eco–social system that would work for all disabled people, of all ages, with all types of impairment, but also for everyone in society. (3)
By asking, ‘What do disabled people really want?’, we are forced to confront a major tension that exists within discussions associated with disabled people: who exactly are we talking about? Each blog will seek to address this question by exploring both theoretical and practical issues.
To ask, “what do disabled people really want?” carries forward with it a series of unspoken assumptions as it is not talking about individual needs or aspirations, but rather forging a collective conscious socio-political thought. Making a statement of this kind can be misinterpreted and lead to false claims such as:
“’Social Model’ seems like an attempt to impose a particular discipline, which again limits free speech, thought, choices. It reminds me of the Stalinist regime and of ‘Animal Farm’ by George Orwell.”
I have never advocated using the social interpretation of disability in a rigid, dogmatic or static fashion. It is a means by which we can explore the nature of capitalist society’s relations with distinct groups of people. Mike Oliver held a similar understanding within his Social Model of disability; it is not ‘fixed’ in time nor application. In my writing, I tend to frame the “subjects” within the Social Model methodology developed by Mike Oliver:
“For me disabled people are defined in terms of three criteria;
(i) they have an impairment;
(ii) they experience oppression as a consequence; and
(iii) they identify themselves as a disabled person.
Using the generic term [disabled people] does not mean that I do not recognise differences in experience within the group but that in exploring this we should start from the ways oppression differentially impacts on different groups of people rather than with differences in experience among individuals with different impairments.” (4)
Some people are uncomfortable with the criteria he offers, but I believe they have a different starting point to Mike and myself. People can be oppressed without knowing, understanding or accepting they are oppressed. What Mike’s three-fold criteria offers is a framing of people with impairments who politically self-identify as being ‘disabled’ through the imposition of social restrictions. The majority of older and Deaf people do not self-identify in this way for a variety of reasons and this, of course, has socio-political implications.
In addition, I share Paul Abberley’s assertion that the disabled people’s movement doesn’t adequately articulate what is meant by ‘social oppression’ in relation to institutionalised discrimination. Neither of us believe they are one and the same. In my writing I attempt to maintain the importance of recognising differences in experience within the social group who have the political identity of being “disabled people”. Just to be absolutely clear, my understanding of ‘differences in experience’ refers to social restrictions which create or maintain disabled people’s exclusion or marginalisation within mainstream social activities. This has implications when considering the difference between oppression and encountered discrimination. A key theme therefore through the series of blogs will be the issue of oppression and its interconnectedness with the question being asked.
Not everyone with an impairment is a disabled person because some people are not subjected to unequal and differential treatment due to the fact that the person’s impairment does not mark them out as different, or where the impairment is not a major factor in the person’s social relations. In dominant approaches towards ‘disability’, it is viewed as the negative impact of an impairment on an individual’s ability to fulfil tasks considered to be day-to-day activities unaided. Using a reductionist logic: “the less a person functions like ‘a normal person’ (sic), the more ‘disabled’ they can be judged to be’. Of course, it is true that within environments designed by and for people with fully functioning bodies, the environments will impose social restrictions on those who are unable to conform to the expected or accepted functioning required to complete certain tasks. The Union of the Physically Impaired Against Segregation (UPIAS) argued that this situation was neither natural nor inevitable; nor was it caused by the impairment itself, but rather how society responds to impairment reality. This is why they broke the causal link between impairment reality and social restriction.
Here then is the basis for the social interpretation of disability. It was constructed by physically impaired people who experienced either exclusion from or marginalisation within mainstream social activities – for example, living, working, socialising within local communities. The core of disability politics therefore is concerned with the struggle for emancipation of disabled people from social prisons. In simple terms disability politics’ original remit had a dual purpose: end segregation through deinstitutionalisation and striving to build ‘inclusive societies’. The concept of ‘inclusion’ had not been developed back in the 1970s and therefore ‘integration’ was used by the early activists to signify the aspiration of disabled people to be full participants within society.
Disablement, using the social approach, is the structures and processes within societies that create and maintain the social restrictions encountered by disabled people. Disablism, it follows, is the ideological and material outcomes arising from viewing ‘functional loss’ as an inferior social status. The majority of social policy as relating to disabled people is concerned with managing ‘abnormal bodies’. As a historical materialist, I argue that disability, that is encountered systematic social restriction, is historically specific. Prior to the capitalist mode of production, individuals who had impairments were viewed and treated according to their personal circumstances and social or faith based assumptions regarding the cause of impairment. There has always been disabled individuals who have negotiated mainstream capitalist society and for the majority of time remained ‘invisible’ or not viewed as a social problem.
Since the development of the social approach towards disability, other people who identify as being oppressed due to perceived appraisals of bodies/minds have either embraced or rejected it as a tool for exploring existing social relations. How these groups relate to the social approach towards disability can only be determined by their collective exploration of their situation. At no time did UPIAS argue the social approach towards disability was thought to cover all groups defined as ‘disabled’ by capitalist society; they suggested commonality and difference did exist in the experience of social oppression, but it was not for physically impaired people to address these on behalf of others. Oliver’s Social Model’s methodology does acknowledge, as we have seen, the need to explore specific forms of disablement and disablism.
In my blogs on ‘what do disabled people really want?’ I am seeking to address particular social situations – that is, the aspiration to fully participate in mainstream social activities. I totally agree with Finkelstein’s criticism of the view that the disabled people’s movement had ‘three big ideas’. Our opinion is that we can only talk about the Social Model, independent living and the value of civil and human rights in a meaningfully way if we see them as interconnected elements of the struggle to overthrow disabled people’s oppressive situation. In the USA, there are people who are suggesting a shift in language, moving from ‘independent’ towards ‘interdependent’ living. Whatever term we employ to refer to the processes involved in establishing the means of inclusive living, it is essential that we acknowledge that social support will be a fundamental necessity for many people due to either impairment reality and/or disabling barriers. As a consequence, this support will need to be situated within the context of the struggle to remove unnecessary social restrictions to full participation within society.
Challenging discriminatory practices against individuals aids our overall struggle, but this political activity is not the essence of disability politics or praxis. I am aware that disabled and non-disabled people will struggle to comprehend this statement, so let me develop my argument. As previously stated, the nature of society in terms of its structures, systems, values, dominant thinking and practices, create and maintain disablement. Under these conditions the relationship between the macro and micro levels of society and the differing environments involved in existing social relations impact upon disabled people’s ability to participate in society. In the United Kingdom, the notion of institutional discrimination against disabled people has been rejected by the major political parties. As a consequence, ‘disability discrimination’ is reduced to being seen as:
“….. when you are treated less well or put at a disadvantage for a reason that relates to your disability in one of the situations covered by the Equality Act.” (5)
This individualises the experience and defines ‘treated less well or put at a disadvantage’ within specific contexts, for example, policies, procedures and practice of employers and service providers. I would argue this narrow way of seeing ‘disability discrimination’ has hindered our ability to identify the structural forms of disabled people’s social oppression in depth because the focus has always been on assisting the individual disabled person to fit into the status quo.
Within the context of the unequal and differential treatment encountered by disabled people, the focus on assisting the individual disabled person to fit into the status quo has been the legitimising force behind maintaining institutional living for those deemed too ‘disabled’ to live within the community. Challenging this assumption and the historical treatment of older and disabled people underpins Act 4 Inclusion’s vision.
Introduction
The current crisis within Social Care cannot be resolved by increased resources or ending privatisation alone; the entire system is oppressive, not fit-for-purpose, and is in need of a complete transformation. Personal and social support has to be addressed within the context o addressing disabled people’s emancipation struggle. The seven or twelve pillars of Independent Living are not about empowering individual choice and control, although that would be an outcome, they relate to creating the means by which disabled people can fully participate within society. It is against this backdrop that the dialogue about the different meanings associated with integration and inclusion was begun within A4I.
I am an officer of A4I and played a significant role in producing its plans, however, in my blogs I will be expressing personal views that may not be shared by the organisation’s membership as a whole. We are not all at the same point in the journey towards understanding what needs doing, therefore I will, if and where appropriate, share my views with them in addition to giving access to the blogs. I am however conscious of Paulo Freire writing:
“Leaders who do not act dialogically, but insist on imposing their decisions, do not organize the people–they manipulate them. They do not liberate, nor are they liberated: they oppress.” Pedagogy of the Oppressed (6)
Dialogically means working through a dialogue; hence, ‘to take part in a conversation or discussion to resolve a problem.’ In this way, we attempt to reach some form of consensus in order to progress. A4I views engagement in coproduction as working via dialogue. This is why the two central officers are known as the Facilitator and the Engagement Officer. I am providing this information in order to place both the discussion I took part in, and the blogs, in context. It therefore follows that as part of the process of embedding the new vision and strategy into our ways of working (praxis), it is necessary to ensure the concepts we are using are understood and shared by our members. This does not mean everyone has to ‘agree’ with every dot or comma, but that the broad ideas and concepts used make sense to the members in ways that can then be articulated to wider audiences.
I am hoping my blogs on ‘integration, inclusion and transformation: what do people really want?’, will lead to further dialogue on what is understood by ‘independent living’ in Britain.
Concepts and meanings introduced into Act 4 Inclusion
My starting point is to explore the core concepts within A4I’s vision and strategy. What do they mean by: “developing an eco-social approach towards developing community-based services”? The first concept to address is ecological which can mean relating to or concerned with the relation of living organisms to one another and to their physical surroundings. It can also refer to that which is characterized by the interdependence of living organisms in an environment.
One of the issues A4I wishes to convey is the urgent need to acknowledge the interconnectedness between the climate, ecosystems, and society. (7) The other related concept employed is social. Social can be employed to mean:
living or preferring to live in a community rather than alone
denoting or relating to human society or any of its subdivisions
of, relating to, or characteristic of the experience, behaviour, and interaction of persons forming groups
relating to or having the purpose of promoting companionship, communal activities, etc.
Within A4I’s vision, all of these meanings are brought into play. Two crucial influences on A4I’s dialogue have been the field of social ecology and what is understood to be the Social Model of disability. The field of social ecology examines society holistically, attempting to understand exactly how society’s collective environmental problems stem from social problems, social interaction, and interaction with the environment. Social ecology pays attention to the social, institutional, and cultural contexts of people-environment relations.
This perspective considers for example, the physical environment, social and cultural environments, personal attributes as a basis for addressing the interactions between individuals, groups, and organisations. By providing context we can gain a greater understanding of the complexity of human situations. Social ecology also incorporates concepts such as interdependence. It seeks to understand how we are dependent on nature for our existence, but also how humans have negative impacts on it. Physical environments include the natural world as well as the built world. The goal of social ecology is to create an ecology of freedom that promotes sustainability for both humans and nature.
What many disabled scholar activists argue however is that disabled people’s social interactions are impacted upon by disablement. Since the 1970s this situation has been explored by both the social interpretation and the Social Model of disability. (8) In general terms the Social Model definition of disability is spoken of as: ‘the loss or limitation of opportunities to take part in the community on an equal level with others because of physical and social barriers’. There is however a tendency to view these social barriers as a result of environmental, organisational, and attitudinal factors without always addressing their specificity or conversely, their interconnectedness. This has resulted in descriptive rather than an analytical usage of social models. I speak of ‘social models’ because I share the view that there is a range of models with differing socio-political sought outcomes attached to them. (9)
Historically, the disabled people’s movement has broadly argued the ‘cure’ to the problem of disability lies in the restructuring of society. Unlike medically based ‘cures’, which focus on the individual and their impairment, the restructuring of society is viewed as an achievable goal and to the benefit of everyone. This approach, referred to as the ‘social model’, suggests disabled people’s individual and collective disadvantage is due to complex forms of institutional and interpersonal discrimination. As I will argue in another blog in the series, the aspiration to change disabled people’s social status through ending their oppression, needs situating within the context of whether this is achievable under Capitalism.
There are already in existence eco-social models of disability that draw upon the bio-psycho-social approach from the World Health Organisation’s International Classification of Functioning, but this does not prevent disabled scholar activists from developing a radical version based upon the ideas put forward by the Union of the Physically Impaired Against Segregation (UPIAS). (10)
As part of the A4I presentation it was suggested that key to developing the new vision and strategy would be the ability to explain and put into action what lies behind the organisation’s new name: Act 4 Inclusion. The immediate task therefore had to be seeking agreement on how we view ‘inclusion’ and then looking at how our understanding of inclusion relates to the vision and strategy. When talking about either inclusion or integration, I have left out the word ‘social’ which should really proceed it, but that decision was taken for practical reasons. There is a danger of overusing the word ‘social’ within dialogues associated with disability politics.
One definition of inclusion is:
“…. how diversity is …. [used as a lever] to create a fair, equitable, healthy, and high-performing organisation or community where all individuals are respected, feel engaged and motivated, and their contributions toward meeting organisational and societal goals are valued.” This definition comes from Global Diversity and Inclusion Benchmarks: Standards for Organisations Around the World (11)
The argument I forwarded in the presentation was that developing inclusion is not the same as integration. Social integration broadly refers to in the majority of cases to a situation where minority groups come together or are incorporated into mainstream society. I hold the view that within a historical materialist social approach towards disability, it is asserted that it is not possible to ‘integrate’ people into a service, system or society that does not cater for their needs, lifestyles or place a positive value on their lives. It is therefore only by transforming the structures, systems, services, through acting for inclusion, will everything become fairer, more equitable, healthy, and able to perform at a high level. Using this argument, I will promote the view that acting for inclusion has to go beyond developing inclusive practices ‘to fit in with existing social norms’ in order to be truly effective. Arising from the definition of inclusion I have quoted, there is a need to ask to what extent can we realistically speak about ‘societal goals’ unless disabled people are involved in setting them?
Broadly, within the United Kingdom’s Independent Living Movement (UKILM), there was recognition that disability is a form of discrimination which is institutionalised throughout society and impacts upon disabled people collectively as well as individually. Historically, the experience of social restrictions resulted in exclusion and marginalisation in the form of institutionalised living for many who have significant impairments. It was asserted that:
To include disabled people within society required us to address the need for deinstitutionalisation.
To create independent living, it is necessary to identify disabling barriers or other social restrictions and prioritise actions for their removal.
Other disabled activists, while agreeing with the general thrust of the argument, raised concerns on two levels. Firstly, they saw the UKILM as developing differently to their US counterparts, and secondly, they placed a greater emphasis on the need for interdependency between people. They saw interacting with other people as being crucial if we are going to build an integrated and sustainable future. These activists believed talking about independent living was problematic and they spoke of Integrated Living. These differences within the broader disabled people’s movement remain important to understand and, I personally believe, they have huge implications for disability politics. I intend exploring how Ken Davis and Vic Finkelstein offered a perspective that is very different to the main one found within the UKILM from the 1990s onwards. It should be noted that these differences however were not discussed as part of the A4I discussion and currently the term ‘independent living’ is employed by the organisation.
What was said as a part of the presentation was that developing inclusive policies, practices, and services requires us to start from the ways in which social restrictions and disabling barriers impact according to circumstances or by taking account of relevant factors affecting different groups of people with impairments. This approach is preferred to simply seeking to address how individuals experience disabling barriers because they have specific impairments. Through identifying existing and potential social restrictions and disabling barriers encountered by older and disabled people we can be better placed to address an individual’s support needs. Building a holistic picture of someone’s lifestyle requires us to consider influences or environments affecting them.
What also needs taking account of is the fact individual influences shape people’s lifestyles, for example, how they view themselves; the knowledge, attitudes, values, and skills, they have. What needs adding to this is consideration of how a person currently live their lives, which includes their personal behaviour. It is not just about removing disabling barriers; developing independent living rests upon understanding an individual’s interpersonal relationships and those they have direct contact with. What this means is taking into consideration a person’s formal and/or informal networks, alongside existing social support systems which may be provided by family members, friends, neighbours, work or members of a club, etc.
A person’s lifestyle and support needs can be impacted upon by organisational or institutional influences arising from interactions with social institutions, for example: day services, workplaces, clubs, political bodies, etc., and their organisational characteristics. Given this, consideration of community influences is required. What kind of relationships does the person currently have with or in organisations with defined boundaries, for example, social and health services? Other community influences could include transport systems, housing, access to local amenities and community-based services. The ability to develop independent living and community-based services is also affected by societal and public policy existing at local or national levels, for example legislation or social policy.
Again, with hindsight, I realise this perspective on independent living may not be a shared one within the UKILM. My thinking has been influenced by the radical social interpretation of disability, but it should be acknowledged that many in the UKILM are sympathetic to the positions held by the USILM which promote ‘individual rights’. (12) These differences have not been aired in recent years and this could be one of the sticking points regarding the UKILM’s ability to move forward.
What does makes A4I’s vision stand out from many other perspectives is the acceptance that there are ecological influences that need to be taken account of. Global warming, climate change and the increasing need to develop sustainable communities all impact upon how we create inclusive societies and ensure older and disabled people are not faced with new restrictions or exclusionary practices. A4I’s vision works from the belief that an eco-social approach can build upon the past experiences of disabled people who employed social model approaches by paying greater attention to the interactions taking place between differing environments where social restrictions and disabling barriers are encountered. As a whole system approach, it encourages inclusive practice and the employment of coproduction. To act for inclusion therefore opens the pathway to the realisation of the demand, “Nothing About Us, Without Us.”
Why is this dialogue important?
When Sandra Daniels, A4I Facilitator, and I discussed the presentation, it was agreed that we wanted to include an exercise that would situate Independent Living within the context of developing community-based services. We share the view that it is necessary to ensure that it is understood that Independent Living is more than gaining personal living support or Direct Payments as it should involve putting in place the ability to have choice and control over all aspects of individual and collective lifestyles. Within current provision too often the question of socialising and participating in communities is neglected.
Given this desire to ground Independent Living in this way, we wanted to employ an exercise which would have two functions: firstly, to anchor an understanding of the difference between ‘inclusion’ and ‘integration’; then, secondly, to enable members to consider what might Independent Living look like for an individual who had a particular lifestyle. The aim was to tease out issues around inclusion, integration and independent living, but also with reference to developing an eco-social approach towards service delivery. Our intention was to focus on understanding the difference between ‘inclusion’ and ‘integration’ in relation to developing an eco-social approach towards service delivery and developing an inclusive society. What unfolded, I believe, raised more questions than it did answers; however, it needs acknowledging that this does not make it a negative outcome by any means.
What did we learn from the exercise? Firstly, it reinforces the view that dialogue is extremely important when seeking to forward a policy or practice. Secondly, the outcome of the exercise demonstrated the dangers of making assumptions about what knowledges already exist and the fact people’s interpretation of meanings can vary so greatly. What I thought would be a straightforward exercise proved, in the final analysis, to be extremely complex.
We also learnt from the exercise the need to reflect upon the consequences which may lie behind the differences that exist. My own reflections have paved the way for the context of my Facebook post and blogs. What I witnessed was how ‘inclusion’ and ‘integration’ could be and often is interpreted very differently by both disabled and non-disabled people. The different views as to what ‘inclusion’ and ‘integration’ were, cut across both groups, therefore there was not two distinct opposing camps made up of disabled people in one camp and non-disabled people in the other. What the meeting also taught me was that differing ‘interpretations’ not only do exist, but these are underscored by the socio-political perceptions people had.
For many non-disabled people, the difference or relationship between ‘inclusion’ and ‘integration’ is contextualised in terms of addressing inequalities and social development across many different groups of people as I will demonstrate later. For lots of disabled people, on the other hand, I believe the understanding of the difference between ‘inclusion’ and ‘integration’ primarily centres upon how they perceive the nature of both disability and society. To be honest, I understood that many used the terms in an exchangeable fashion, however, I thought since the 1990s disabled people familiar with Independent Living and disability politics had made a clear distinction between the two. In other words, I believed disabled activists’ attitude toward the word ‘integration’ had changed over time. (13)
To try and make sense of the lessons learnt, I want to unpack what I see as underpinning the different socio-political perceptions that exist. I have already shared the definition of inclusion used in the meeting however, I want to drill down further into what is viewed as ‘integration’ and eventually link it to how disabled people view the nature of both disability and society. In my opinion one of the reasons the terms have been employed in an exchangeable fashion is because they can be seen as having a common aim.
Within mainstream discourses around ‘inclusion’ and ‘integration’ there has been a tendency to focus on educational systems specifically, or social development generally, but for disabled people the debates have a specific application. Whether the debate be about education or wider society, I would argue that while both approaches aim to bring disabled people into ‘the mainstream’, one system expects them to adapt to the pre-existing structures and ways of doing, while the other seeks to ensure the existing structures or systems will adapt or change in order to accommodate the needs and interests of given disabled people or other diverse groups of people.
Mainstream discourses around ‘inclusion’ and ‘integration’
What I would like to do in this section of my blog is explore how ‘inclusion’ and ‘integration’ have been employed in a context beyond being connected solely with either disabled people or education. These concepts are used in relation to social development. In a draft paper for the United Nations’ Department of Economic and Social Affairs it was stated:
“The World Summit for Social Development, held in March 1995, established the concept of social integration to create an inclusive society, “a society for all”, as one of the key goals of social development.” (14)
It might be useful for any dialogue around the concepts under discussion to consider the concepts and meanings applied in the paper, Vision for an Inclusive Society. (15) A number of the paper’s concepts/definitions are worth consideration. Here are the main ones:
Social Integration
Social integration is understood as a dynamic and principled process of promoting the values, relations and institutions that enable all people to participate in social, economic, cultural and political life on the basis of equality of rights, equity and dignity. It is the process in which societies engage in order to foster societies that are stable, safe and just – societies that are based on the promotion and protection of all human rights, as well as respect for and value of dignity of each individual, diversity, pluralism, tolerance, non-discrimination, non-violence, equality of opportunity, solidarity, security, and participation of all people, including disadvantaged and vulnerable groups and persons.
Social Inclusion
Social inclusion is understood as a process by which efforts are made to ensure equal opportunities for all, regardless of their background, so that they can achieve their full potential in life. It is a multi-dimensional process aimed at creating conditions which enable full and active participation of every member of the society in all aspects of life, including civic, social, economic, and political activities, as well as participation in decision-making processes.
Before making any observations on these two definitions, let us acknowledge what the United Nations views as social exclusion.
Social exclusion
Social exclusion is a process through which individuals or groups are wholly or partially excluded from fully participating in all aspects of life of the society, in which they live, on the grounds of their social identities, such as age, gender, race, ethnicity, culture or language, and/or physical, economic, social disadvantages. Social exclusion may mean the lack of voice, lack of recognition, or lack of capacity for active participation. It may also mean exclusion from decent work, assets, land, opportunities, access to social services and/or political representation.
In this paper, the United Nations are speaking about ALL people from across the globe. It is not my intention to address the UN’s ‘agenda’; my interest is purely focused on the mainstream concepts/definitions and to what degree they aid or hinder our understanding of the meanings attached to integration and inclusion. My starting point therefore is to question the usefulness of these concepts/definitions; and to determine to what degree they provide clarity, or simply reinforce muddled dominant thinking? How are they applied?
Unfortunately, I am not able in this blog to critique this paper due to a lack of time and space, therefore I will limit myself to presenting key facts that shine light on the debates past and present. By considering the first six commitments made at the World Summit for Social Development via its 1995 Declaration, it is possible to see how the UN approach social integration and social inclusion. They stated:
1. Commitment to creating an economic, political, social, cultural and legal environment that will enable people to achieve social development.
2. Commitment to the goal of eradicating poverty in the world, through decisive national actions and international cooperation, as an ethical, social, political and economic imperative of humankind.
3. Commitment to promoting the goal of full employment as a basic priority of our economic and social policies, and to enabling all men and women to attain secure and sustainable livelihoods through freely chosen productive employment and work.
4. Commitment to promoting social integration by fostering societies that are stable, safe and just and that are based on the promotion and protection of all human rights, as well as on non-discrimination, tolerance, respect for diversity, equality of opportunity, solidarity, security, and participation of all people, including disadvantaged and vulnerable groups and persons.
5. Commitment to promoting full respect for human dignity and to achieving equality and equity between women and men, and to recognizing and enhancing the participation and leadership roles of women in political, civil, economic, social and cultural life and in development.
6. Commitment to promoting and attaining the goals of universal and equitable access to quality education, the highest attainable standard of physical and mental health, and the access of all to primary health care, making particular efforts to rectify inequalities relating to social conditions and without distinction as to race, national origin, gender, age or disability; respecting and promoting our common and particular cultures; striving to strengthen the role of culture in development; preserving the essential bases of people-centred sustainabledevelopment; and contributing to the full development of human resources and to social development. The purpose of these activities is to eradicate poverty, promote full and productive employment and foster social integration. (16)
On paper, it is doubtful anyone supportive of radical agendas would object fundamentally to any of the six ‘commitments’ however, twenty-six years on they do appear to have a hollow ring to them because very little has developed along these lines. At the heart of the matter is this expressed view:
“What is most significant in creating an inclusive society is the engagement of the individual in the process by which society is managed, ordered and represented.”
Across the globe, including the UK, we are seeing less not more participatory democracy as well as the denial of human and civil rights. In terms of disabled people’s struggle for emancipation and the debate around transforming existing systems, I want to avoid being totally dismissive or pessimistic regarding the way forward. I see a political necessity to retain the traditional language of talking about disabled people’s struggle for emancipation because I believe it is the right way to speak about their historical situation. To be emancipated means free from legal, social, or political restrictions; liberated. Within this context, the draft paper is difficult to accept because of the things it fails to acknowledge, such as the nature of capitalism or colonialism, but it does give us nevertheless much food for thought. It is worth reading if you can make time.
What I want to highlight from the paper is the following section where a clear distinction is made. The paper says:
“It is important to understand that social integration is not an end-state
that societies can achieve, but a dynamic process in which societies engage in order to further human development. The concept of social inclusion is similar to that of social integration. However, social inclusion, focusing on creating conditions for equal opportunities and equal access for all, is considered to be useful when describing the actual process involved in promoting social integration.” (15)
What I see this as saying is that ‘social integration’ is:
“…. the process of creating unity, inclusion and participation at all levels of society within the diversity of personal attributes so that every person is free to be the person she wants to be. Personal attributes include socio-economic class, age, gender – sexual preference and expression, political ideas, ethnicity and cultural traits, religion, citizenship (national origin) and geographical region of origin and so on. Social integration enables persons, regardless of their attributes, to enjoy equal opportunities, rights and services that are available to the so-called mainstream group.” (18)
Whilst the above is not a quotation from the paper, I would argue what it says does reflect the essence of what is put forward by the Vision for an Inclusive Society paper. What is interesting however is that the paper itself goes on to state:
“Social inclusion is also often more easily accepted as a policy goal, as it clearly eliminates a connotation of assimilation that some associate with the term “integration” – not all individuals and/or groups in societies are eager to be ‘integrated’ into mainstream society, but all strive to be included.” (19)
The paper proceeds to quote Cezar Busatto who wrote:
“Inclusion is community. No one becomes included by receiving handouts, even if these handouts are given by public bodies and with public resources. No one becomes included by being treated by a program in which they are no more than a number or a statistic. Inclusion is connection to the network of community development, it is to become more than a speck of dust, to have a forename and surname, with one’s own distinctive features, skills and abilities, able to receive and give stimulus, to imitate and be imitated, to participate in a process of changing one’s own life and collective life.” (20)
Turning to Busatto’s own paper, I wish to bring attention to how he outlines the dominant thinking on social inclusion in the following manner:
“The concept of inclusive society refers to the notion of social inclusion, that has so far mainly been approached from two standpoints:
a) Inclusion operated by the dynamics of a market society, referring to
individual and collective ability to acquire the necessary income for appropriate insertion into the consumer market of goods and services; and
b) Inclusion promoted by public policies for inclusion, focusing on those
who are unable to be included through the dynamics of the economy (including here those excluded for reasons that are not directly economic: race, ethnicity or color, gender, nationality, language, faith, culture etc., or some physical or psychological condition requiring special needs and being generally associated with different access to goods and services.)” (21)
I would argue both approaches adhere to dominant capitalist ideology and reinforce traditional perceptions of disablement. Busatto goes on to speak about specific groups of ‘the excluded’ (sic) in this way:
“…. the destitute and poor in general, but also (in addition to children, the elderly and people with special needs) young people, the sick, women victims of violence (especially domestic violence) and social minorities suffering from some form of discrimination or prejudice due to race, color, creed, gender, learning, nationality, culture, faith, etc., indigenous peoples, the landless and people from slave settlements, alcoholics, drug dependents etc.” (22)
What I am suggesting is that even in 2007, mainstream dialogue on social inclusion portrayed older and disabled people through set paternalistic stereotypes which negate disablement as a socio-political problem. This has serious implications for campaigning for transformative change. With so many words and concepts having multiple meanings, it is vital that every effort is made to have some form of consensus in relation to how we see things.
Whether it is within A4I, Reclaiming Our Futures Alliance, or wider society, we have a responsibility to ensure we are conversant with what disabled people really want. We cannot assume there is a consensus on this because disabled people are not a homogeneous group despite having the commonality of the experience of facing disablism. Before we can exercise our responsibility, I believe it necessary to address how disabled people view their social situation. I wish to try and unpack some key aspects of understanding views on their social situation in this series of blogs.
Disabled people, oppression and the question of dialectics
Within the discussions inside A4I there is an acknowledgement that disabled people are oppressed, however, the nature of disabled people’s social oppression has not been fully explored. This situation is not uncommon because there has been a tendency among disabled people to see oppression and discrimination as being one and the same. I believe this to be a huge mistake.
Paul Abberley in 1987 stated:
“It is clear then that if the notion of oppression is to be of use in the analysis of disability in society, and most importantly of use to disabled people in understanding and transforming their own situation, we must clarify and develop what is meant by the term.” (23)
Understanding how and why disabled people are subjected to differential and unequal treatment requires us to interrogate the notion of oppression as it is applied to disabled people. We must consider the relationship between oppression and discrimination in terms of identifying the nature of disabled people’s social disadvantage. Without going through this process it is difficult to grasp their true situation or provide the tools for them to transform their own situation. Disabled people’s emancipation struggle and establishing what disabled people really want is fraught with problems because many tensions and contradictions exist.
Paul argued that:
“…. to analyse the oppression of disabled people in part involves pointing to the essential differences between their lives and those of other sections of society, including those who are, in other ways, oppressed.” (24)
This is a crucial point being made here, and though in the first instance it may be viewed as an obvious one, in truth it is complicated by the conflicts that surround how different perspectives ‘made sense of’ why these essential differences exist. As I said in the preamble, not all people who are impaired have been or are subjected to differential and unequal treatment, encountered exclusion and marginalisation and have been oppressed. It is for this reason Paul goes on to argue:
“To claim that disabled people are oppressed involves, however, arguing a number of other points. At an empirical level, it is to argue that on significant dimensions disabled people can be regarded as a group whose members are in an inferior position to other members of society because they are disabled people. It is also to argue that these disadvantages are dialectically related to an ideology or group of ideologies which justify and perpetuate this situation.
Beyond this it is to make the claim that such disadvantages and their supporting ideologies are neither natural nor inevitable. Finally it involves the identification of some beneficiary of this state of affairs.” (25)
How disabled people are ‘viewed’ relates directly to how they are treated. It centres upon what is understood by ‘disability’ and where it is located. This is why he links the encountered disadvantages and their supporting ideologies as being in a dialectical relationship. In other blogs in this series I will seek to explore disadvantages and their supporting ideologies and in the final blog consider what might constitute ‘the dialectics of disability’. By ‘disadvantages and their supporting ideologies’, I am referring to the contradictions, conflicts and tensions involved in disabled people’s struggle for emancipation. Vic Finkelstein once wrote:
“…. I believe that we cannot understand or deal with disability without dealing with the essential nature of society itself. To do this disabled people must find ways of engaging in the class struggle where the historical direction of society is fought, won or lost. It is in this arena that the boundaries of knowledge that have put disabled people aside from the ‘normal’ can and have to be openly questioned. For me repossessing the social model of disability means searching for openings in the structures of society where we might effectively contribute with others in the restructuring of society so that it is neither competitive nor disabling for all people.” (26)
This assertion, ‘we cannot understand or deal with disability without dealing with the essential nature of society itself’, is at the heart of the dialectics of disability, the emancipation struggle and the driving force behind A4I’s vision, but most crucially, it is a means by which disabled people can have engagement within the class struggle. Why speak of dialectics?
“Marx saw the dialectics in human history as a struggle between different social classes. Sure there were ideas – but these were reflections of material realities.
He took key dialectical concepts and applied them in new ways. …. Marx explained how feudalism or capitalism could initially take humanity forward but would then be constrained by their own inner contradictions.
When the social structure of a society could no longer grow the ‘productive forces’, it was time to break with that society. The ruling class as the thesis would be confronted by a highly disgruntled antithesis in the form of the exploited class. And the resulting clash would create a new synthesis – that in turn would be challenged at some point.’ (27)
I would argue both disablement and disablism are social products within this struggle.
The conflict between the individual tragedy and social models of disability are a reflection of this antagonism and as a consequence this reveals a series of contradictions which impact upon disabled people’s lived experiences.
I wish to conclude this blog by stating the belief that in order to understand the conflicts, differences and challenges within disability politics and praxis it’s necessary to address the central battleground which is how the body is viewed and treated. Paul Abberley wrote:
“The importance of the body in modern western society has been noted, for example in feminist literature and in considerations of youth culture, although any systematic sociological study has until recently been absent. For disabled people the body is the site of oppression, both in form, and in what is done with it.” (28)
This notion of ‘the body is the site of oppression’ is a core aspect of understanding disabled people’s social situation. A major difference I have with UPIAS’ articulation of why disabled people are oppressed turns on this statement:
“In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society. To understand this it is necessary to grasp the distinction between the physical impairment and the social situation, called ‘disability’, of people with such impairment. Thus we define impairment as lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body; and disability as the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities.” (29)
The original social interpretation of disability focused upon people seen as physically impaired. UPIAS accepted the Amelia Harris’ definition of impairment. (30) In my opinion these two facts lay the framework for seeing the emancipation struggle of disabled people as being about tackling the restrictions which prevented people with nonconforming bodies from being active within mainstream social activities. Where I differ from UPIAS is how they view the cause of this situation – exclusion or marginalisation. They state that the negative treatment is ‘caused by a contemporary social organisation which takes no or little account of people who have physical impairments’. I argue that this is a flawed articulation because it ignores the dialectical nature of the situation. In my opinion it is precisely how the bodies of physically impaired people were taken into account which ultimately led to the contemporary social organisation of society being exclusionary. The debate around Social Care and Independent Living needs to be addressed against this backdrop as well as the consequences behind calling for integration, inclusion or transformation. This said, none of these issues can be fully addressed without confronting the nature of capitalist society.
Nicolas Carteron wrote:
“Capitalism is not designed for all of us to succeed or for the many to have equal opportunities. It is designed for a minority to hold the means of production, extracting a profit from the working masses’ labour-time. The system was never intended to make us all millionaires, but for us to accept its alienating nature, we had to believe it was.” (31)
Whilst this is undoubtedly true, the alienating nature of capitalist’s processes and values have specific issues in relation to this ‘acceptance’. It is this above all else which makes it extremely difficult to come to terms with what disabled people really want.
Notes
Verma, R. (2018) 49% of Disabled People Feel Excluded From Society, EACH OTHER,
Where it is both safe and possible to do so, I have capitalised Social Model to refer to Mike Oliver’s original model.
Finkelstein, V. (2007) The ‘Social Model of Disability’ and the Disability Movement. Vic Finkelstein used Disability Movement rather than the Disabled People’s Movement
30. See: Abberley, P. (1991) Three Theories of Abnormality, Occasional Papers in Sociology, No. 10, Bristol Polytechnic Department of Economics & Social Science
31. Carteron, N. (2021) The Greatest Lie We Were Sold Capitalism has shaped the Western world through lies and guilt, and it is pushing humanity towards collective suicide.
Act4 Inclusion is a campaign organisation that believes the current system of Social Care is broken beyond repair, not fit for purpose nor democratically controlled. It fails to give dignity and respect or ensure those who need support can have control over their preferred lifestyles.
On 7th September 2021 the Prime Minister, Boris Johnson, announced new plans to reform health and social care funding which will include raising taxes which will hit ordinary people and not the wealthy. The bottom line is that Johnson’s plans will not resolve the crisis it is a cruel illusion.
We would like you to support us in spearheading a movement to develop a new community based eco-social system which bases support on taking into account the ecological and social issues that impact upon people’s lives. Adopting such a perspective paves the way to a transformative approach for social support in the future Independent Living can be developed through a community based eco-social system ensuring civil and human rights.
A new national service would adopt a holistic approach towards delivering services These services would employ coproduction to put individuals and groups at the centre of identifying and addressing barriers to independent living We believe services ought to be free at point of use.
We want the new national service delivered via community based services that work for all disabled people, of all ages, with all types of impairment, other service users and for everyone in society.
Join our campaign and act for inclusion
For general enquiries or if you wish to contact the officers, you can email: [email protected]
Visit our website to join www.act4inclusion.org You can follow us, share articles, and comments on
Facebook: https://www.facebook.com/groups/act4inclusion and Twitter @act_inclusion
On the 22nd of May 2021 at the AGM Reclaim Social Care the campaign organisation adopted a new vision and strategy alongside voting to change its name to Act 4 Inclusion. We wish to invite you and anyone you know who is interested in addressing the current crisis within Social Care along to our official launch.
Act 4 Inclusion wants to see the development of a new national service framed by a community based eco–social system which needs to work for all disabled people, of all ages, with all types of impairment, and for everyone in society. A community based eco–social system would take an intersectional approach towards policy making, considering the differential impact of universal and targeted policies across the diversity of disabled people and other service users.
Using a community based eco-social approach for understanding the basic relationships between service users and their environments moves away from traditional need-led assessment procedures towards addressing how to create inclusive participation in both local communities and wider society. Effective inclusive participation enables individuals and communities to work together to build capacity in shaping and engaging in decision-making processes through coproduction and the development of confidence, skills, knowledge and experience.
Alongside our new Vision we have a fresh Strategy involving: · Strengthening the resistance to cuts
· Safeguarding and deinstitutionalisation
· Campaigning, development, and promotion
· Using a community based eco-social approach
Our launch will hear from invited international and national speakers from campaign bodies Act 4 Inclusion hopes to work alongside in the future. We will also reveal our new logo.
The launch will be by Zoom. Please register to ensure you receive the link to join.
On 7th September 2021, the Prime Minister, Boris Johnson, announced new plans to reform health and social care funding which will include raising National Insurance (NI) via a levy.
Many argue that increasing the tax will punish the young and worse off. Johnson’s new plan will lead to a NI increase of around 1.25 per cent, thus raising £10bn a year, but this will also lead to limiting a rise in the state pension.
Act 4 Inclusion believes, like many other bodies, the last decade has seen the crisis within the system known as Social Care deepen however the solutions put forward have nearly all remained both inadequate and absent of the voices of those directly involved – the service users and workforce. It is right to argue for a national debate on the way forward and how to pay for it. However, it is essential that, before we talk about finances, we need to agree what we want to pay for – what kind of system and services do we want to replace the current broken and discriminatory system? What is being delivered and to whom is never discussed because the mass media perpetuate the myth that Social Care is all about ‘looking after the elderly’ (sic) – but that is untrue. Neither is the crisis all about the money either.
Act 4 Inclusion fears the crucial issues will be side-lined by the arguments around the inequalities of the British tax system. It is important to understand that the government is extremely skilled at employing divide and rule tactics; it is a common ploy to play on prejudices and fears. We should note the fact that the government often float ideas knowing they will elicit a negative reaction as this will soften the ground in preparation for the real agenda. Already the idea of a hike in National Insurance has provided a platform for ageist and disablist bile.
Leaving aside the debate about the true nature of the crisis and the need to replace a system not fit for purpose; we need to question the real agenda behind Johnson’s announcement. Is it a financial quick fit for resource bare services or is it a Trojan Horse? The government, we know, want to create new markets and sell services off to American interests. It is a safe bet companies such as Unum Insurance would jump at the opportunity to assist setting up and running a national health insurance scheme. Opposing the government’s discriminatory plans has to be part of a bigger campaign to promote a new transformative system and services defined and designed by those who use it, publicly funded through equitable taxation, free at the point of use, and not for private profit.
Bob Williams-Findlay MA
Act 4 Inclusion Engagement Officer
For further information about Act 4 Inclusion and to join email [email protected]
