The interview was conducted with Ms Judith Heumann, disability rights advocate at the Harkin Summit, Belfast, Ireland, by Mr Arman Ali, Executive Director, NCPEDP. The summit brings together key champions and implementers from around the world to increase the employment of people with disabilities.
Judith (Judy) Heumann is a lifelong advocate for the rights of disabled people. From 1993 to 2001, Judy served in the Clinton Administration as the Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education. During his presidency, President Obama appointed Judy as the first Special Advisor for International Disability Rights at the U.S. Department of State, where she served from 2010-2017.
Following is the transcript of the interview.
Judith Heumann: My name is Judith Heumann. I’m a 74-year-old white, disabled woman. I have brown hair with highlights that come to my shoulders. And I wear glasses and I’m wearing a top and pants. I’m originally from Brooklyn, New York and now I live in Washington, D.C. But here we are, our mind meeting in Belfast, Ireland. I think this is a very important journey that we’re all making to the Harkin summit and one of the reasons we’re gathered is to really talk more about the issue of employment. Looking at the success that’s been happening over the last number of decades, albeit nowhere near as much as we believe it could happen and should happen, we are seeing more disabled people being brought into the public and private sectors. Equally, we’re seeing disabled people who are becoming entrepreneurs and setting up their own businesses.
Employment, I think, is a topic that most people around the world agree is more than just the ability to work and earn money. But employment also is something that makes us appear in our communities as more or less equal. For those people who have disabilities and are having difficulty finding jobs, there is a perception that they are unable to work as opposed to work opportunities not being provided. I believe that’s a very important distinction. Companies that are employing the same people, whether it’s the public or private sector, are certainly seeing not only the productivity of their disabled employees but also that non-disabled person and people of other kinds of disabilities are also learning that disabled people are like everyone else. You know, we have things that we lack and we dislike. We have families we don’t. We have children we don’t. But ultimately, most of us really want to feel valued. We want to feel that we’re respected for who we are. And employment is so critical. So, the ability to really work in a very proactive way within the public and private sector, learning about what government and the private sector is doing to recruit, to bring people into the world of work, to provide accommodations where they’re needed, is very important. But I’d also like to say there are two other issues. Many there’s many more, but many people acquire their disabilities while in the workforce and so I think it’s very important that we are also looking much more in-depth and data is something that we can in fact look at for people that have been paying into like Social Security systems, how many of those people are falling and how many of them were working then lost their job due to disability? What is going on within the public and private sectors to help people be able to maintain their jobs so that disability doesn’t become something which is adversely affecting?
Arman Ali: How about People with disability living in rural areas?
Judith Heumann: So, in countries like India, which are so vast, we have city and rural areas. That’s a very big issue. And I think the principles, however, are the same and that is who are the major employers in the rural areas? How are disabled people being brought into the economy in those communities? And what is going on in education? What is going on in training? What are the messages that are being given in rural communities about the capacity of disabled people? I visited a few rural areas in India. I’m no expert, but what is very clear is that in the rural communities where the disability community is organized and is working, the status of disabled people in those communities’ advances. Advances, because people now are looking at disabled people as people and are beginning to call people by their names and are learning about them and learning about what their interests are. So, it’s a step-by-step, but I think the voices of disabled people in rural communities coming together, focusing on employment and education because they do go hand in hand for many people, is what we’re looking at. And media I think media is so very important. The media should not be representing the disabled.
Arman Ali: What is your experience regarding disaggregated data about people with disability?
Judith Heumann: So, I haven’t been to India in a number of years, but I’ve been there a few times and I think India, like other countries around the world, we are seeing a more organized disability community, not where it needs to be but definitely more than it was ten, twenty, thirty years ago. And the voices of disabled people coming forward from the village level up are making the government look more at disabled people again, not enough, but more than before. I think part of that is because the disability community in India and other countries has become more assertive. We are seeing ourselves as wanting to be a part of the mainstream. Data is a very interesting issue because governments send many organizations are driven by data. And in the past, when data wasn’t being collected, then when the disability community would come forward saying disabled children aren’t in school, they’re not graduating, they’re not getting jobs, and it’s disproportionate to non-disabled people. There wasn’t data, but now that there’s increasing data which is showing both the problems of employment for disabled people, the higher rates of unemployment but I think India also is a country where there are many disabled people who are their own bosses, who are setting up their own companies, their own businesses. They’re being creative because they weren’t able to get into the mainstream of society and that’s helping the economy in India. I believe data is very important. I believe it is our responsibility as disabled people to be demanding that data is being collected, where data is being collected for other groups and on other issues. So housing, transportation, education and employment are some of the critical areas. And I believe that the data needs to be collected in such a way that people will answer a question honestly. Many people in India and other countries are not going to answer the question “Do you have a disability?” But if you ask functional questions like “Are you able to walk more than so many miles?” “Are you able to carry something?” “How many children of school age live in your home and how many are in school?” “How many people of working age are living in your home and how many are working?” These are very important questions where people are more likely to give honest answers. So, data is essential, but we begin to collect more and more accurate data that can then be utilized to inform the implementation of laws, creation of policies, and budgeting, to make sure things can happen.
Arman Ali: What are your views of the disability movement in India?
Judith Heumann: India is an amazingly powerful country and the disability community there, like in any other country, trying to work together I think is really important. Not fighting each other, but working collectively because we have similar objectives, right, regardless of the type of disability you have. I think in order to get the private sector to see disabled people, for example, as customers, is very important to be working together, to be able to get government at all levels- national down to the local, to also recognize that disabled people must be a part of what’s happening, that needs to be driven by the disabled community and parents of children and allies. But, you know, you were one of the first countries to have a law like the Americans with Disabilities Act after the United States had its law in 1990. And so, I think India is an amazingly powerful country, leading by example, I think is very important and I’d love to come back to India.
Arman Ali: And we would love to have you over! Government plays a huge role in furthering change by introducing enabling policies. Would you say you agree ?
Judith Heumann: Government, I think, plays a very important role in advancing education and employment and housing and transportation, etc. The government needs to be leading by example. It needs to speak about the ability of disabled people to work and their interests and needs to be looking at the unemployment of disabled people as a drain on the economy. And I say that because, since disabled people, most of us are able to work and are able to contribute, we really do need a clarion voice coming forward. And I believe the government and private sector have been doing reasonable work in this area for a long time. But getting those messages out both to the general public and within, the government sectors and the private sector is very important to step up the activities that are happening.
Arman Ali: What is your take on the systems that regulate funding for the disability sector?
Judith Heumann: We’ve seen historically that it’s been difficult for disability-run organizations to get financial support both from the government when you’re not doing direct services, but also from corporations and foundations. Work is happening more rapidly in the United States, for example, with a foundation called the Ford Foundation, which many people, I think in India have heard of the Ford Foundation a number of years ago, under the leadership of their president, Darren Walker, began to recognize that if, in fact, the foundation was going to be striving towards equality and equity, that they had to be addressing the issue of disability. So, we’ve seen over the last 4 to 5 years that a foundation like Ford has been making significant improvements within the foundation, not just to funding programs in the area of disability, but also to having the other organizations they are supporting include disability and what they’re doing. And they’ve set up a US-based group called the President’s Council on Disability, and that’s made up of 15 foundations in the US. And one of their main purposes is to be integrating disability into us financial support that they’re giving. So, if a foundation is working in the area of employment, hypothetically and they previously were not including organizations doing work in the area, employment of disabled people, that would be something that some of the foundations are looking at. So, looking at foundations that didn’t do disability or did limited disability, getting them to see that disabled people are part of that community and self-funding disability programs as well as getting other organizations to be inclusive of disability is very important and making a difference.
Arman Ali: Thank you so much, Judith.