At last! The disability research project led by people with disabilities

Joe Kenny, a blind person living in Belfast said: “I've been totally blind for 34 years now so I believe I'm entitled to consider myself as an expert in how it affects my life. I've always found it confusing that some academics, members of the medical profession and social care professionals seem to think they know more than me about this.”

This is an especially damning critique given that many of the barriers people face are created by the rest of society: through our attitudes, education systems, employment practices, transport facilities, even our buildings and open spaces.

Indeed it is legitimate to argue that the biggest barrier to people with disabilities leading fulfilled independent lives is that the rest of us deprive them of their rights and compound the injustice by stigmatising them.

Joe Kenny added: “What is really important is that we need to get away from the notion of disability per se. We could all lead full lives if it were not for the barriers that society puts in our way because they do not think about our needs. That's the real challenge.

“We live in a sighted world, so if you can't see, there are barriers, many of which could be removed or reduced.  Where there's a will there's a way.”

This is what makes Disability Research on Independent Living and Learning (DRILL), a £5 million UK-wide project funded by Big Lottery, so significant.

Sylvia Gordon, of Disability Action, leads the project in Northern Ireland. She is new to the disabilities sector and admits: “I was taken aback that this was the first big programme that’s really looking at independent living from the lived experience.”

DRILLinvited applications for funding from groups or individuals wanting to carry out research or pilot projects aimed at removing barriers to independent living.

The document is a brilliant example of the use of plain English and all the usual jargon is either discarded or explained with a comprehensive glossary. It should be compulsory reading for those in the public and voluntary sectors who want to learn to communicate with a public which is not familiar with the often arcane language they use amongst themselves.

It seems that this was one of the first lessons from a series of roadshows that were held in Scotland, Wales, England and Northern Ireland, which underscored the impact of not having previously included people with disability in leading research into the issues they face.

For a start many of those who turned up not only did not speak the same language as researchers but did not see themselves as having a disability.

Sylvia Gordon said: “They didn’t understand the jargon. Jargon busting was an obvious issue for us to discuss.

“How others refer to disability also emerged. Should we talk about people with a disability or disabled people for example?

“One response is ‘I don’t give a damn, this is very personal to me, describe it how you like just make sure that I have what society can provide for me’.”

Sylvia says that many have an issue with a term often used by policy-makers and the sector - “vulnerable” - often used in the context “the most vulnerable in society.”

The problem here is that if you have a disability but don’t regard yourself as vulnerable, that in itself can be a barrier.

Ironically the project is an example of a new way of working, dubbed “co-production” by its proponents. This turned out to be another piece of jargon that either needs to be clearly explained or dropped from future communications.

It is probably not surprising that a result of treating people with disabilities as “subjects” of research rather than inviting them to lead it has in itself created barriers to understanding, with so many either not understanding or relating to the terminology used about them to the most profound extreme of not recognising yourself has even having a disability.

Joe Kenny believes this is an exciting development and has his own views on why it has not happened before: “This project is potentially very empowering. It is important that people with disabilities lead research into the barriers that prevent them from participating fully in any aspect of society. We are often the subject of research, leading it is fundamentally different.

“As to why it has never happened before, I can't say, but it's true that people with sight loss do not perform as well in exams or other academia, as fully sighted peers. They are therefore not as well represented in academic institutions. This is not a reflection of intelligence, but more evidence of the sort of barriers we need to overcome. “

So how does DRILL define disability?

It provides a lucid description.

“When we talk about disability we mean the things that can stop people who have any experience of physical or mental impairment or long-term health condition from participating in activities in the way people who do not have an impairment can. We call the things that can get in the way ‘barriers’”

Note that this includes people with mental health conditions and long term health conditions, cancer would be an example.

And as to the barriers these are defined as follows and also worth quoting in full

• Bad attitudes and behaviour towards people who have an impairment or long-term health condition, like not taking any notice of what they say, assuming they cannot do things when in fact they can, intimidating or harassing them, or treating them as if they are children and cannot make decisions for themselves. We call these ‘attitudinal barriers’.

• The way buildings are designed so that people with some types of impairment or long-term health condition cannot get into them or use them like everyone else. The same can apply to outside spaces and transport that are not designed so that everyone can use them equally. We call these ‘environmental barriers’.

• The way things like employment, services, or events are organised. For example, event organisers may not be flexible about how, when or where something is done, even though it would make no difference to the purpose of the event. They may not allow enough time for meeting papers to be translated into Braille or easy read, or for people who cannot use inaccessible public transport to travel to a venue, or insist someone has to work at a certain time even if it is the sort of job where it really does not matter.  We call these ‘organisational barriers’. 

• The way things are communicated which exclude people with some forms of impairment or long-term health conditions. This is not just about things like using very small print or lots of jargon, or inaccessible web-sites, or not providing British Sign Language or Irish Sign Language interpreters and so on. It is also about the negative images of disabled people that are often used in the media. We call these ‘communication barriers’.

• The extra costs of disability – for things like having to use taxis, extra heating, special diets, etc - combined with barriers to getting a job and earning an income. We call these ‘financial barriers’.

This is a triumph of clarity which in itself should help to increase understanding of what disability actually means and brings people into the fold who are currently prevented from playing a full part in society but have never seen themselves as disabled. It is even broader than that, however.

Sylvia Gordon explains “Lots of people do live independently but don’t necessarily play as full a role in society as they could do, the barriers they face also need to be explored and broken down.”

“We are really pushing boundaries here and trying to reach people who do not realise that the funding we can offer applies to them.”

The first tranche of proposals are now being considered. The programme runs until 2020.

The partners in DRILL are: Disability Action (working in Northern Ireland), Inclusion Scotland Disability Wales and Disability Rights UK (working in England)

Full details of the programme are available at DRILL’s website http://www.drilluk.org.uk/