5 questions to ... Gregor Wolbring

We asked Gregor Wolbring about his work around sustainability and diversity.Various articles that might be of Interest to the readers are referred to as hotlinks.

Gregor Wolbring is a Full Professor at the University of Calgary, Canada, In the   Community Rehabilitation and Disability Studies program. He is also a member of the Institute for Technology Assessment and Systems Analysis (ITAS), Karlsruhe, Germany and a senior fellow of the Institute for Science, Policy and Society, University of Ottawa, Canada. He is also the academic director of Disability and Accessibility in the Office of Equity, Diversity, Inclusion at the University of Calgary. Regarding former appointments, he was the President of the Canadian Disability Studies Association and a member of the executive committee of the Canadian Commission for UNESCO. He describes himself as a scholar of ability studies, disability studies, sustainability studies, science and technology governance studies and EDI.

With our questions, we wanted to learn about his work, its relation to inclusive participation and barriers to participation.
 

1. How does your work connect to inclusive participation in real world labs or other forms of citizen participation in research and urban development?

Gregor tells us that his work focuses on the lived experience of disabled people. He published his first climate change paper back in 2009 in which he questioned the invisibility of disabled people in the climate change discourse. Since 2009 his group has published over 30 papers on environment related topics using a disability studies and/ or ability studies lens. These articles covered for example concepts such as sustainability, ecohealth, Rio+ 20, Post-2015 Development Goal Agenda, environmental activism (here and here), environmental education, education on Sustainable development and emergency and disaster management, planning and preparedness (here and here), (for another author that critically engaged with environmental issues in conjunction with disabled people see Ableism and disablism in the UK environmental movement by Fenney and some other papers by Fenney). Gregor also recently questioned the discourse around walkability.

Disabled people including  disabled youth that want to engage in environmental activism encounter many problems which have led to the problem that many experience activist burnout due to the many barriers they face as activists. At the same time do academic studies not engage with activist burnout experienced by disabled people although they do so for activists in general (see Gregors paper on burnout).

He uses for all his work the framework of ability expectation and ableism studies short ability studies he coined to investigate humans-humans relationships in general including relationships between people classified as disabled and able but also humans-nature, humans-machine and humans-cyborg humans relationships. There are two other ability based studies streams, studies in ableism  coined by Fiona Campbell and critical studies of ableism by Dan Goodley. There is also the concept of eco-ableism coined by Gregor, eco-ability coined by Nocella and eco-crip theory by Ray (described here).

2. What are systematic barriers for people with disabilities regarding participation in real world labs or other forms of participation?

For Gregor Wolbring, inclusive participation links directly to ability expectations. Which abilities are necessary to participate? For example, the concept of anticipatory governance is used within science and technology governance.  What individual disabled person has time and a lived reality that allows the disabled person to know before the anticipatory governance begins to engage in anticipatory advocacy to be part of anticipatory governance (on that topic, Gregor recommends the Master thesis of one of his student; Anticipatory Governance, Anticipatory Advocacy, Knowledge Brokering, and the State of Disabled People’s Rights Advocacy in Canada: Perspectives of Two Canadian Cross-Disability Rights Organizations)?

Furthermore, what disabled person has the time and a lived reality that enables the disabled person to participate in discussions on any given topic? There is the problematic lived reality of disabled people (see UN Convention on the rights of persons with disabilities), which in turn causes the fundamental issue of disability burnout (as in disablism burnout as in burnout due to systemic discrimination disabled people face), [1] (not open access) (Gregor quotes Gill in his burnout paper.)  

There is the lack of access to data to learn about topics, bias in what counts as evidence, bias as to what research questions get funded and the lack of equity, diversity and inclusion experienced  by disabled people within academic and non-academic workplaces. As such the many barriers do not allow for a systematic participation. Another problem to participation is that disabled people are treated as a homogenous group. But of course, the lived realities of disabled people vary, and one can belong to different disability groups.

“We talk a lot about intersectionality but rarely acknowledge the intra-sectionality and individuality of disabled people.”

Another challenge Gregor describes is the lack of literacy of the people classified as non-disabled. How many would be aware of the problems the elimination of the single use plastic straw would pose to a variety of disabled people? In general, the lack of data in relation to many topics makes disabled people invisible, and so disabled people are not even seen as impacted and missing.
 

3. What can we do in real world labs to reach and integrate them better

According to Gregor, there is no simple answer to this question. He believes that literacy needs to improve, but without a drastic reduction in systemic discrimination, the problem will usually be that there will be few disabled people who know enough about a subject to meaningfully contribute to the discussion.

What one can do also depend on the topic of the real-world labs. One example he refers to is this article about a real world lab for autonomous cars.The autonomous car, especially the taxi, is an interesting case for the need for intra-sectionality and one solution-does-not-fit-all-literacy related to disabled people. The issues blind people face, and the reality that makes an autonomous car and taxi useful are different than for a wheelchair user. An autonomous taxi built like a normal car with a trunk does not work for wheelchair users.  

"The question is, when building an autonomous car and taxi, whose autonomy are they being built for?"

So, we are back to the situation where taxi companies might have specific wheelchair autonomous taxis with the same problem of numbers of taxis and waiting times, we have with normal wheelchair taxis. Furthermore, without autonomous charging the autonomous car a wheelchair user has might be useless for travel as the wheelchair user cannot use the normal charging stations. So, it’s the same problem with a normal wheelchair adapted car that the petrol stations are not wheelchair accessible. And as there are very few full serve petrol stations now (at least where he lives) getting petrol is a problem.

Then not every wheelchair is the same which is often not thought about (see  "Citroen “Ami For All” Is A Wheelchair-Friendly Prototype EV For Disabled Drivers"). People reading this will say it's cool. However, the reality is this only works for very specific wheelchairs. Not every wheelchair is the same. But the article, of course, does not cover this issue.


4. What are the advantages of online participation for inclusive real-world labs

The advantages, as Gregor points out, depend on the real-world lab. Some things might not work online. But some people like him prefer virtual (live or asynchronous) (till beam me up Scotty becomes an option) to circumvent the many non-accessible urban realities most of which are not in the control of the real-world labs. Others prefer in person for various reasons. Again, others prefer virtual asynchronous so not live.  So here it depends on who we are aiming for as to disabled people. So very likely we must provide various ways.
 

5. What are the barriers of online participation?

Gregor notes that barriers are different for different disabled people. Some cannot afford a computer or internet. Some cannot deal with the visual so cameras, for some who cannot hear there are differences in quality of automated transcription and for some even if the transcriptions are perfect, some non-hearing people still need sign language as sign language is different to how the hearing people speak.   

To sum up Gregor recommends the BIAS FREE FRAMEWORK (Building an Integrative Analytical System For Recognizing and Eliminating inEquities) here and here (the three tables in both are the important part). It’s a framework developed by Mary Anne Burke and Margit Eichler as a tool for identifying biases that derive from social hierarchies. The Framework poses 20 questions that indicate biases that help maintain hierarchies in three main sections: H-Maintaining an Existing Hierarchy; F-Failing to Examine Differences; and D-Using Double Standards. Looking at any given discourse and reflecting on how one answers the questions might allow people to see some problems. 

Ultimately, it is about improving literacy and reducing barriers, and we must find solutions for that. Problems with website design, transport, employment and more have been known for a long time. And new sets of problems are now being added without the old ones being solved.

Sources

1. Gill, C.J. Depression in the context of disability and the “right to die”. Theoretical Medicine and Bioethics 2004, 25, 171-198.