Boxed in? Report

Highlights of a debate exploring issues of identity, self, community and belonging for disabled people.

 2nd February 2012 Glasgow Caledonian University

 1.   Background to the debate

For years disabled people have been subject to disempowering systems making decisions on their behalf. The development of the social model of disability and growth of the disabled people’s Independent Living Movement (ILM) challenge this imbalance.  A crucial aspect of this is the development of the ILM as a social movement for change.  

 The legal definition of disability is wide.  This clearly has implications for individuals and their rights and for those with duties and responsibilities under the legislation.  It also has implications for the success and strength of the disability Movement as an agent for social change when people who are covered by the definition of disability do not see themselves as fitting that ‘label’ or identity, and do not therefore add to the collective voice for change. 

 How we self identify as individuals and as part of our communities is subject to many factors.  It is personal, complicated and has many layers and it carries with it emotional, social and political implications.  For these reasons, it is important that identity is not imposed on someone or a group of people and that instead, self-identity is supported and respected. 

A successful Movement is one that brings about change.  To do so, it operates as a community which mobilizes and shares resources and aims.

As the Independent Living in Scotland project (ILiS) aims to work within the disabled people’s Independent Living Movement in Scotland and to support the Movement to grow and strengthen, the issue of identity and identification with the Movement is integral to the project. 

The debate in Glasgow in February 2012 was hosted to allow those in the Movement, their allies including those from academia, media, the public sector and other disabled people and their communities to have an open and formative discussion on the issue of identity.  The debate was called “Boxed in” to reflect the issue of identification as an imposition rather than a choice, it also reflects the sometimes narrow focus of what people may consider ‘disabled’ to mean and represent.

2.   Summary of key points

 Key themes from the debate:

  • Injustice
  • Power and empowerment        
  • Self identification
  • Representation and perceptions of disabled people

 The ‘Boxed in’ debate started by recognizing that many people, regardless of how they ‘label’ themselves, experience injustice and oppression as a result of society’s attitudes towards difference and impairments.  The discussions highlighted that whether or not we identify as ‘disabled’, and/or with the disabled people’s movement, impacts on our individual and collective power to challenge injustice and unequal access to opportunities and rights.

 Central to the debate was the issue of why someone would want to identify as ‘disabled’ in the first place.  Participants from the debate ranged from those who readily self-identify as disabled and those who do not.  Many people spoke about the need to balance the stigmatization of disability with the empowerment attained by aligning oneself to ‘disabled’ as a badge to be proud of and gaining strength from being part of a bigger group.  The audience and panel shared the view that identity was complex, personal and multiple. 

 We concluded that the key to challenging the discrimination and negative perceptions surrounding disability was not to impose identity but to build strength in unity by empowering people to both recognize and celebrate their differences and commonalities.

3.  The panel (profiles of each panel member in Appendix 1)

 Chair:  Anne Wilson, Chair of DG Voice

 Tressa Burke:  Executive Director of Glasgow Disability Alliance and board member of Inclusion Scotland

 Paul Holleran: Full time Organiser in Scotland for the National Union of Journalists (NUJ)

 Professor Bill Hughes:  Professor of Disability at Glasgow Caledonian University

 Martin Hilland:  Board Member of the Long Term Condition’s Alliance and a graduate of Glasgow University

 David Buxton:  Chief Executive Officer of BDA

The debate

 “Boxed in” was held in Glasgow Caledonian University in the library atrium.  it was chosen as a fully accessible venue and to ensure people could fully participate in the debate BSL interpreters and Palantypists provided specific communication support and Personal Assistants were also available.

 Setting the scene and opening the debate, Dr Anne Wilson spoke briefly of her own experience in finding her identity as someone who acquired an impairment later in life.  She told of how her medical training as a GP impacted on her initial understanding of disability and her ‘new identity’, and how this was quickly challenged by the Disabled People’s Organizations she came to know of and work with.  Anne used this preamble to introduce the first question:

 a)   “The disability movement’s mantra has been ‘nothing about us without us’ for many years. Who is ‘us’”?

 The panel discussed what it means to identify as ‘disabled’ - or to be legally defined as disabled but not necessarily identify as ‘disabled’.  Key to this debate were issues of injustice, power and self identification. 

 It was argued that, from an academic point of view;

 “[disability identity begins with] “internalising a sense of injustice”.  

 This was echoed by disabled people themselves, who said they have united as a Movement to fight against injustice, caused by inequalities in power and that this has created a sense of ‘them’ and ‘us’. 

 The panel felt that ‘us’ represented everybody who identifies as having barriers as a result of the way society reacts to their impairments and ‘them’ as the powerful, those who oppressed disabled people. 

 This led the debate onto 2 specific issues:  who specifically is the ‘the oppressor’ and what determines who identifies as having barriers as a result of how society reacts to them?  

In feminism, it was considered easier to think of the immediate oppressor, ‘men’, however, to do this in relation to disabled people, first requires an understanding of a ‘non-disabled identity’.  This is problematic as the oppressor of disabled people, Professor Hughes argued, “is not a body of people but a set of dominant ideas of disability that have been developed by non-disabled people and that have a negative impact on disabled people”.

Given such complexities, the notion of ‘self identifying’ with the ‘us’ is not only about empowerment but is also practically useful.  This however, brought the debate to the very heart of the issue – why would one identify as being disabled?

The impact of the current representation of disabled people in the media, particularly around welfare reform and spending cuts was considered to have a negative impact on the number of people who ‘defined’ themselves as disabled.  It was argued that “if [people] saw it as being an empowering label....[to] gain collective strength” against the powerful, then more people may identify. 

Recognising the need for a critical mass to challenge oppression and power and that we don’t need consensus about everything, Tressa argued we should develop a coalition to consider the really important issues that unite us and where we can draw strength, and where the;

“‘who is us’ question, doesn’t divide us”

b)   “How are disabled people going to be able to explore their identity, who they are and where they belong and have community acceptance when we are currently being branded as benefit cheats and scroungers”? 

Following from the discussion on power and the need for collective action, the importance of disabled people – especially young disabled people – coming together with other disabled people and share experiences was a key concern.  However, it was pointed out;

“exploring identity is not a priority when people are struggling to live and survive in the current economic climate and the welfare reform agenda”

It was thought that this has a huge impact on the numbers of ‘us’ to challenge ‘them’ and to gather more support for and grow the ‘us’.

David was particularly concerned about the possible repercussions for disabled people of being labelled benefit cheats and in particular the impact of this on Hate Crimes against disabled people.  He said the wrong message was being given to the general public and that this not only threatened the development of the ‘us’ but that so too the long fought for and won rights of the ‘us’;

“we have to stand up and say we are not committing fraud”. 

This led onto a long discussion about the role of the media in influencing public perceptions of disabled people.  Paul agreed that the press had a role to make sure that vulnerable sections of society are not excluded by the use of certain language or by being labelled in a certain manner and that the misrepresentation of disabled people as fiscal and emotional burdens should be addressed quickly, to address the scapegoating it promotes and the challenge for identity this presents.  He called for further research (into media portrayal) to be carried out and called on disability groups such as Inclusion Scotland and others to work with the NUJ to improve standards in the media.

Tressa said there was a role for disabled people's organisations to celebrate identity and the achievements of disabled people and to try and overcome this negative perception.

c)    “Should transgender people have access to the same rights and benefits as disabled people?"
Bill Hughes said;         

“[there are] barriers to being and barriers to doing”

Transgender and disabled people had similar barriers to “being” – stigma, stereotypes, prejudice. However the barriers to doing were different - eg access issues and adjustments for disabled people didn’t affect transgender people.

Tressa Burke said transgender and disabled people often felt “pathologised” by the medical model ie their bodies are not normal and not working properly;

“There is a parallel between the medical models we both inhabit – we all have the same human rights. When you can share that common ground it gives us a way forward – we don’t have to agree on everything.”
Fergus of LGBT Scotland agreed and felt that, when seeking support, transgender people can be over-medicalised and can result in stigmatization, similar to that experienced by disabled people as a result of the medical of disability;

“The stigma and prejudice that can be found in the press about transitioning being an option for transgender people is a really important issue and has parallels with other disabled people.”

Paul Holleran said proposals for a new press ombudsman coming out of the Leveson Inquiry into the media would give disabled and transgender people more right of reply challenging stereotypes;

“we shouldn’t be afraid of who we are.”

Bill Scott of Inclusion Scotland said as well as the physical, communication and environmental barriers already mentioned, attitudinal barriers for transgender and people with mental and sensory impairments were very similar;

“For some people there are real questions involved in identity here and issues for the LGBT community about coming out or not; and for disabled people acknowledging their impairment, for example; if someone with a mental health issue tells their employer there is a one in five chance they will be sacked”
Martin Hilland spoke about the part that a diverse range of role models can play.  He noted that ‘conventionally disabled’ people had good role models such as the actors Christopher Reeve and Michael J Fox which others don’t have;

“There will be a core of groups who are ‘conventionally’ accepted as ‘disabled’ and a wider alliance, there is no point running away from that reality.”

Mahmud Mal-Gailani of VoX raised the issue of intersectionality of identity.  He noted the implications for claiming rights and seeking justice where people have multiple identities, and that this has had particular implications for reporting hate crime on the basis of disability;

“Our membership doesn’t identify as disabled but as having mental health issues … no one has reported a disability hate crime in relation to mental health yet we hear of people being abused because of mental health problems.

David spoke of his personal experience finding identity as a young Deaf person, noting that he didn’t see himself as being disabled.  He spoke about the impact of imposing therapy on people and how, in trying to make Deaf people into people that can hear and talk like others can, without communication support, society denied a particular part of his identity, whilst oppressing his potential.

“I went to an oral school where sign language was banned, so it compounded the idea of not having a sense of identity.  I thought I am just a hearing person.  Eventually I had access to other Deaf people at the age of 18 and realised that BSL was my first language. That is where I realised … my identity. Sign language is part of me.  I … am very happy with who I am and there is nothing wrong with me. I don't have a disability, but society says I have a disability”

John from Dumfries and Galloway said he too considered himself part of the Deaf community.  He highlighted some of the issues with identifying with the dictionary definition of disabled and spoke about how it is possible to find common ground, when we consider disability from a social model point of view.  He called on disabled people and deaf people to work together;

“If you look it up in the dictionary, disability means you are not physically able and there are physical barriers to you.  If you are in a wheelchair you can't access a building with stairs because there is no ramp. For deaf people our barrier is not physical, our barrier is communication.  We have to think how to integrate and work together because we need to work in parallel.  We have to be far more proactive in our campaigning ... [Deaf people] already have part of the disabled Movement who are very active about their rights and think about the future ... so [it’s] not them and us [instead] work together to stop the oppression”.

d)   “The people that want to get rid of labels and see the person tend to be those least affected by labels themselves, so how does the panel feel they can move beyond a point where labels are used to empower people and seen as an integral aspect of identity … and at what point do we move on from the social barriers to the aspirational model where we can view ourselves with these positive labels for disabled people?”

Professor Hughes noted that a rise in the perception that a ‘disabled life is not worth living’.  He felt that disabled people are not treated as people first and returned to his initial point about non-disabled identity;

“we so readily embrace genetic engineering that promises to eradicate disability … why are non-disabled people so afraid of disability; we need to ask these questions to “them”

Paul Holleran added that stereotyping makes it extremely difficult to embrace an identity that can support rights and promote a positive perception of disability;

“If you are being stereotyped or stigmatised on a regular basis by the media or politicians that undermines your identity” 

Tressa Burke added that labels can be used to empower people;

“I think its about conciousness raising, getting collective strength and recognising disabled people have a contribution in promoting that message.”

David Buxton argued that being Deaf and using sign language was his “label”;

“I am very happy and proud of that label, but I don’t want to lose it as society does not recognise me then as a deaf person.  So I don't want to remove the label that I am wearing, we all need to be proud who we are in society and the roles we play.”

5.   Next steps/ future discussion points

 Further research needed into the media portrayal of disabled people – disability groups should work with the National Union of Journalists to improve standards/language, right of reply etc

  • Deaf and disabled communities should integrate better and work together to address oppression
  • Work together in a coalition – we don’t need to agree on everything

Appendix 1:  profiles of the panel members

  Anne Wilson:  Chair of DG Voice (a user led group of disabled people in Dumfries and Galloway) and founder member of Inclusion Scotland

 Tressa Burke:  Executive Director of Glasgow Disability Alliance and board member of Inclusion Scotland. Tressa plays a key role in the Independent Living Movement as an individual activist, a collective campaigner and leader in the ILM.  Tressa is a disabled person with an unseen impairment

 Paul Holleran: Full time Organiser in Scotland for the National Union of Journalists (NUJ).  Paul’s work in the media offers insight into the role of the media in this debate

 Professor Bill Hughes:  Professor of Disability at Glasgow Caledonian University. His research interests include disability; the body and social theory; care; gender and equality and diversity. Professor Hughes is also a member of the Editorial Board of the British based International Journal, Disability & Society

 Martin Hilland:  Board Member of the Long Term Condition’s Alliance and a graduate of Glasgow University.  He has researched health economics and lectured in industrial relations and politics.  Martin also worked in community-based housing associations in inner-city Glasgow, was Director of Woodlands Community Development Trust, a charity pursuing innovative projects in housing, economic development and culture and a Glasgow City Councillor.  Martin was diagnosed with Parkinson's Disease in 1998 and now carries out a mixture of charitable and paid work

 David Buxton:  Chief Executive Officer of BDA.  David has campaigned on Deaf issues for over 25 years.  Before taking up his current role in BDA, he was Regional operations Manager for Scope.  His focus as CEO of BDA is on an empowered Deaf Community and campaigning on the issues related to Deaf Culture, Deaf Identity and, most importantly, British Sign Language