Dave Lupton interviews disabled activist Doug Paulley in the continued series of first-person accounts about the life-changing impact of connecting with the social model understanding of disability.
Doug first came across the Social Model understanding of disability when he was in his late teens at Leeds University. Describing himself as a feisty and rights-based disabled person, the understanding that he wasn’t disabled by his impairment but rather by the failure of those who placed barriers in his way, fitted easily with his own beliefs.
He also changed his worldview at this time, where his belief changed from the default that society was broadly attempting to emancipate and support disabled people, to an understanding that society as a whole was fundamentally indifferent to the barriers disabled people face, unless of course, it impacted upon them. He also became aware that there were some who took it a step further and actively penalised disabled people, such as the Department for Works and Pensions (DWP), whom he has protested against with other disabled activists on more than one occassion.
But it wasn’t until later that the social model understanding really chimed with him, largely due to input from Rainbow Ripples, a Leeds based campaigning organisation for lesbian, gay and bisexual Deaf and disabled people. Attending on a regular basis, Doug absorbed their ethos and social model approach, building on his existing understanding through discussion with other members.
He told me: “I found that the informality of the discussion groups and the low-key teaching methods really helped the concept to sink in … for which I’ll be forever grateful to them.”
However, the relevance of the emancipatory importance of the social model didn’t really hit home until Doug moved into residential care at the age of 23. He discovered that the unpleasant changes that affected his life within this institutionalised environment brought it home to him just how disempowered and excluded disabled people could feel. His observations of how himself and fellow residents were not supported in maintaining an independent attitude but were repeatedly undermined and ‘trained’ into being grateful for a lower quality life-style, really hit home.
Doug told me: “This is so apparent where I live: so many disabled people have been dumped here by their families and left to moulder in front of the TV for years with no support or encouragement to achieve any real independence. We were being swallowed by one of the biggest charities who claimed to represent us – living in a care home run by Leonard Cheshire. Also, if any of us were to challenge the people who were running the home, we were told to “manage our expectations” for the sake of the easier running of the home and the charity.
“We were trained, albeit in a subverted way, into accepting a world in which we were expected to subjugate our needs and expectations for the sake of not rocking the boat. This is an insidious and invidious process, and I soon became very aware of the irony involved in actually living as a disempowered disabled person in the care of the charity, as opposed to being the ‘empowered’ and ‘independent’ disabled person falsely portrayed in their publicity materials.”
Looking back on how the social model understanding helped Doug start to challenge the existing state of affairs at the home, he explained to me:
“It was immensely emancipatory and helpful and allowed me to utterly understand that the problem wasn’t ME; that I was not being unreasonable in expecting a reasonable quality of life, with access and inclusion and adequate service provision as a disabled person. My refusal to accept the corrupt status quo totally undermined the attempts by service providers, especially Leonard Cheshire staff, to characterise problems and treatment as due to my unreasonable expectations. It freed me from the individualised blame; and it made me realise that I was part of a vast oppressed group.
“However, it also made me feel frustrated and angry at the injustice of society continually undermining, demonising and side-lining disabled people. I realised that not all impairment effects can be ameliorated or removed by adaptation by society, but that the majority of us would be able to function equally if there was some attempt at proving a level playing field.”
When I asked Doug how he’d applied the social model understanding to his life as an activist and campaigner, he told me:
“It has affected the way in which I campaign. It is those barriers which are constantly placed in our way that become the focus of my campaigning, whether they’re institutional, environmental, physical or to do with how we communicate. I always feel obliged to challenge these barriers whenever circumstances allow, which has also had an effect upon the rest of my life.
Doug describes how he’s had brickbats thrown at him as someone who’s chosen to stick his head above the parapet and be a ‘visible’ disabled campaigner. He’s been undermined and attacked by people and institutions, both directly and obvious, but also through subtle and underhand mechanisms which he feels are more difficult to deal with.
He added to this by saying: “However, there is a perennial danger of taking and accepting these criticisms, the claim that I’m being unreasonable; of absorbing the concern that I am a querulant, unreasonable and strident selfish git!
“Of course, I do have to watch out for being just that, and I explicitly tell close co-campaigners to please tell me if I am! And I also have to watch out that I’m not taking onboard and owning any criticism or the subtly internalised institutionalisation that comes my way.”
It is clear that for Doug the Social Model understanding has been a fundamental strength, allowing him to challenge societies belief that, as a disabled person he cannot be allowed to be on an equal footing. It’s also enabled Doug to realise that it isn’t HIM that is being the unreasonable one!
He told me: “It has given me confidence to continue to have a public profile, using my nerdy nicheness to attempt to leverage for better compliance with disabled people’s rights, even in the face of such comprehensive and scary brainwashing by organisations and a society that continuously attempts to limit disabled people’s expectations for our lives.”
When it comes to sharing his understanding with others, Doug tells me that he’s not explicitly done so, but his default mindset in the ‘disability arena’, and in life in general, is framed and explained by the Social Model. Therefore, he feels that every approach he makes regarding his experience as a disabled person, or being in care, or when legally challenging charitable organisations, is implicitly based upon the social model mindset. By inserting the concept of barriers within these situations, he has therefore subtly introduced them to social model thinking.
Doug went on to explain just how he feels that the understanding has had such an impact.
He told me: “I think the social model understanding is incredibly emancipatory and is responsible for making some massive changes within our society. Having been born out of the embryonic Disabled People’s movement with an emphasis on acknowledging a basic right to inclusive living, the right to travel and the right to an inclusive education, whilst far from being fully achieved, disabled activists still continue to fight for these fundamental rights.”
When I asked Doug if the social model understanding had run its course and was no longer relevant, his answer was an emphatic NO!
He told me: “It isn’t all-encompassing: sometimes I experience disabling effects of my impairment which nobody can do anything about, and which are not due to barriers in society. And there are scenarios where the social model can be difficult to apply; particularly in the field of mental health with survivors of the mental health system – myself included.
“There are also barriers that can be indirect, subtle, or due to disabled people subconsciously absorbing internalisation of non-disabled people’s mindsets. But I think it is still absolutely fundamentally correct, a valuable philosophy and a powerful tool that people can use to empower and emancipate themselves in campaigning for a better future.”
But for Doug, this song by the Karen Sheader Band says it all: