Image: A rather inaccessible meeting room. Martin Deutsch, Creative Commons licence, Flickr.
It’s been at least 30 years since we first started talking about emancipatory disability research, in the disability studies arena. As I start my fieldwork, I’ve been appalled at how difficult it is even to make basic arrangements that will allow disabled people to be involved. You can’t have a participatory research project if disabled people can’t participate.
Of course it’s always logistically difficult organising research. But now try to imagine a small PhD research project that specifically needs disabled participants. With an extremely limited research budget, but a commitment to good accessibility, with all the costs that entails. And a disabled researcher who has various difficulties with making arrangements.
I’ve just had an email from a certain prominent religious-community venue (run by a religious group which has a stated commitment to social justice), offering me a non-fully-accessible room for a price that is well outside my range, and suggesting that I change my (accessibility) requirements if I want it for less. And that’s a community space. In other locations, my only option has been hotels, which are mostly far outside of my budget. This is the situation for researchers attempting to enable good participation for disabled people. I’m approaching despairing point – though I probably should have seen this coming. (I’ve sent the religious group in question a rather blunt email. This research project is making me braver…!)
So many things go into accessibility*, when it comes to planning groups or events like this. A few examples of what might be necessary:
1. Proximity to excellent transport links. This rules out many universities and a lot of community venues. A related issue is needing excellent on-site parking. Again, there aren’t many places where this is possible – I’ve always struggled with finding good parking on university campuses, and libraries can vary on this (although may need to be ruled out for other reasons – see below). Some community centres are more likely to have nearby parking and transport links, but it varies. Private venues like hotels are the most likely to have good parking.
2. Longer sessions (which raises the prices of venues). Travelling for just an hour is very hard for those with many impairments. Accessibility problems on most forms of transport means that many disabled people can’t cross longer distances easily, and so to ask them to do that for short sessions may be unfair. Especially if it will mean that you need to ask them to travel twice. So it’s good to limit follow-up meetings – instead, I’m trying to do everything at once, in slightly longer sessions. It’s also important to have sessions that are long enough to allow for regular breaks, as asking some people to do two hours in a row could be a problem. People who have fatigue issues, who need medication breaks, or who are on the autistic spectrum may find long sessions without breaks too difficult.
3. Providing catering and quiet rooms. Whereas a focus group of non-disabled people could pop out to the shops for coffee during breaks, this may be much more difficult for some disabled people. Providing on-site catering (if only tea and coffee) can be a real help for those who would otherwise need to work out access and support for local cafes. Similarly, on-site quiet rooms can allow people with autistic spectrum conditions (and others) to take the time out that they may need during the focus groups.
4. Equipment. Does the venue have hearing-aid loops, both at reception and in the meeting rooms? Do you need to hire adaptive equipment, and are you allowed to use it in the venues? Is there an extra charge for LCD projector hire, which you might need for visual aids? Are there wheelchair ramps at the entrance? (Good access is not just about ramps, but it does need to include wheelchair access!)
5. Support workers. Do any of your participants need British Sign Language interpretation or palantypists? Are they bringing personal assistants, and is there space in your meeting room for them? This is where asking participants about their access well in advance is important. There can be long waiting lists for interpreters, palantypists and other support providers. And you may have to find quite a lot of money for them. That’s just how it goes, if you want to include disabled participants. Do it.
5. Offering an at-home alternative. Ultimately, some disabled people will not be able to travel to focus group venues at all. In our technology-friendly world, there are alternatives. Skype is one good possibility. Some people with learning difficulties have told me that Skype makes things more accessible for them (although that will vary). Excitingly, it also allows inclusion of people who can’t easily leave their homes. Of course, Skype doesn’t work for everyone – it particularly excludes d/Deaf people, and many older people and others who are less likely to have internet access. Offering to visit people in person, if Skype is no good for them, is another option there.
These are only some of the issues that may be important to consider if you’re organising research groups with disabled people.
To me, it really matters that my research groups are as fully accessible as possible. I know the incredible frustration and anger of being excluded from something because access isn’t good enough. Here, it sends the message that research organiser/s are not interested in including the views of disabled participants. In my research, I’m very aware disabled participants are involved specifically because they are disabled (and Christians), and that they’re giving up their time for that reason. Given that, to exclude them for disability access-related reasons would be completely unacceptable. And of course, it would be very bad for my research, which would be skewed in terms of participation and sampling as a result.
I know I won’t get it completely right. I’m battling with society’s total inability to provide access in a majority of buildings. The limited number of venues I can use, and the staggering cost of venues that meet all the potential accessibility needs, is a major issue. And so is the clash with my own disability access problems. But I’m working on it.
And just think – this is only the very beginning of the journey towards a participatory research project guided by the emancipatory disability paradigm. There’s so much more to do…
I think I need a cup of tea.
Do We All Get a PhD? Attempting emancipatory research relating to disability in an academic environment – Julie Seymore and Ruth Garbutt
Both available at the University of Leeds Disability Archive
*The statement “But isn’t it illegal for venues to be inaccessible?” is one of those headdesk-inspiring comments that I get asked about twenty times a day. Please stop asking this, and just believe that most venues are not fully accessible for most disabled people, one way or another. We can discuss all the social and legal reasons for this another time.