‘I used to think of it as a Judy referral’
23 March 2018
Last week, Judy Heumann, our global ambassador visited the UK for our ‘Bridging the Gap’ conference.
We caught up with Judy and Professor Nora Groce, Director of the Leonard Cheshire Disability and Inclusive Development Centre at UCL, to hear about their respective celebrated careers in the realm of disability, their friendship, and what they see for the future of disability inclusion.
Judy and Nora’s friendship dates back to the early— to mid-1980s.
Although both grew up in Brooklyn, Judy was living in California at the time working on setting up the Centre for Independent Living.
Neither can remember exactly how they met, but Judy is confident that Nora’s work preceded her.
‘While I don’t remember literally how I met Nora, I know my first in depth knowledge of Nora was reading her book.
‘It was a great book and I knew in reading the book, Nora would be someone I’d like to get to know.’
The book ‘Everybody here spoke sign language: hereditary deafness in Martha’s Vineyard’ was a ground-breaking piece of research and marked the beginning of Nora’s career in the field of disability and development.
‘I hate it when things are unfair’
Judy has fought her whole life for disability rights, beginning with her personal battle for equal education and employment, and later campaigning for key legislation in the US.
Nora’s involvement in the movement, however, occurred more by chance.
‘While writing my thesis as an anthropologist, I published a short piece in a popular journal.
‘It was the first thing I’d ever published and I thought, maybe my mum or my boyfriend will read it, but I got like 800 letters from all these people involved in the disability rights movement.
‘Their message was "it’s not us, it’s surrounding society" and they wanted to know where in the world disabled people are accepted equally.
‘I stumbled across a large group of people with hereditary deafness on Martha’s Vineyard.
‘Everybody was bilingual in English and sign language, so people who were deaf were fully integrated into society. So suddenly I found myself in the middle of a movement that I’d stumbled into.
‘I hate it when things are unfair and it seemed to me that the issues around disabilities in the late 70s, early 80s, were very unfair.’
Nora is clear that, throughout her work, she never speaks on behalf of people with disabilities; she describes her job as ‘producing ammunition for people to use.’ This is something which Judy admires about her.
‘One thing I like about the way Nora works is that she very much recognises that you can’t do research without including people who you’re researching, regardless of what the issue is.’
Over the years, Judy would recommend Nora’s work to others in the field. When she met young people who were interested in university, she would often direct them to Nora.
‘I used to think of it as a Judy referral
‘She’d meet someone on the train and suddenly, four hours of messages later on my behalf, I’d counselled them into graduate school!’
The pair worked on their first project together in the 2000s, when Judy was working for the World Bank and Nora was based at the School of Public Health at Yale University. At Judy’s suggestion, Nora got involved in a World Bank project exploring HIV as a disability issue.
When the opportunity came up for Nora to move to London and work at the Leonard Cheshire Disability and Inclusive Development Centre at UCL, Judy encouraged her to take the opportunity.
It is one of the few centres in the world that specialises in applied research on disabled people in low and middle income countries — exactly what Nora wanted to do.
‘Really good research should cause trouble’
At the heart of their work, both Judy and Nora share a passion for bringing about change.
‘What I always tell my students is, good research should make a difference. Really good research should cause trouble. I want to cause trouble.”
Throughout their careers, they have seen a lot of positive change, but both agree that if you were to measure out chronologically how far things have improved for disabled people, we’re less than halfway there.
‘I think that taking disability out of the medical model and making it a human rights issue has been a sea change.
‘In many, but not all countries, I think it’s a completely different discussion to what it was 30 or 40 years ago, but still not one that’s complete.’
So, where next for their work?
Judy says there is still a huge amount of work to be done to ensure disabled people in developing countries have the same access to rights people have in countries such as Britain and the US.
‘We are required in our countries to do many things which we don’t require when our money is being used overseas.
‘I think what’s unjust about that is, we should know that when our money is being used to construct things that are not accessible, it not only has an adverse effect on people today, but there’s not enough money to go back and retrofit.’
Judy is confident that this is the key issue which needs to be addressed, before scaling up development work can be considered. Teaching is essential to bolster the inclusion of disability in all international development work.
These are wise words from one of the architects of the disability rights movement. It was indicative of a fascinating conversation between two old friends, who also happen to be among the most influential disability rights experts in the world.
To have their collective brain power contributing to Leonard Cheshire’s international development work is a potent force for good.