Sometimes it's easier to argue for inclusion while everything is going well. But in an economic downturn, or with other uncertainties, people might not be willing to try something new, or make an investment in inclusion.
Today I bring you a conversation with Jose Viera, Advocacy Director at the International Disability Alliance, to understand how we can continue to make change and get others to come with us.
Jose has been at the heart of the international work that has brought governments and civil society together. In this interview he shares with us the way he approaches advocacy and how he navigates the challenges the disability movement faces.
One of the motivations for doing these interviews on the Debrief is to get an inside view on how people are making change and how they understand the work that they do. Jose shows us how his advocacy approach is closely tied to the way he understands the disability movement and our opportunities:
“I try to confront people with the reality in front of us. If you don't know what the reality is, how can you change it? Once we frame the conversation through bringing what the reality is, the next element is that you can be a partner to people with disabilities to change that reality. The element that I always like to share and not to convince people of, but at least to share, is that the reality that we are trying to change will bring better things for all.”
This is the approach that ran through our conversation too: basing things in the context that we're in, making sure change is based on people's choice, and pointing towards the opportunities that are there.
Being able to understand both where we are and where we need to be makes Jose more interested in change as process, rather than destination. Jose understands the disability movement as one that has grown out of people who looked for solutions to what limited them in their own lives, and then taken that forward:
“This lack of free decision making processes made us think that we need to be the leader of the change if we want to see something improved. That’s why we didn't stop, or many of us didn't stop. We got what we went to the organizations looking for, and we took that flag and carried it out in different ways.”
As that journey implies, the disability movement is made up of grassroots organizations and activism, and those who took that flag forward deep into working with or inside establishment organizations. Sometimes these different positions and perspectives can lead to tension within our movement, and Jose acknowledges this directly:
“We are part of a political movement with interests, different interests, money behind, power behind, reputation. Why wouldn't that be part of a social movement of a person with disabilities if that is part of the daily conversation of other movements? The fact that those tensions exist speaks to the fact that we are definitely creating something big or we are pushing for something important.”
Jose argues that living in tension “is not a bad thing” but also that it can “make us better”. It is especially important as we face economic crisis that “will definitely impact on the inclusion of persons with disabilities.” Our movement is faced with two tasks simultaneously:
“We as the disability movement will have to play two games, from now on, and I would say for the next five or ten years. One is to create better opportunities, and the other is, at the same time, to ensure that what we’ve achieved doesn't get lost.”
One of the familiar frustrations that we face in advocacy on disability is the feeling that we haven't gone far enough. Jose's point about the second game means that sometimes even staying put can be a victory, for defending where we are. Jose's message isn't that we should “sit back and relax and wait, but to be aware of the time that social change requires”:
“Sometimes we are too hard on ourselves as activists wanting to change quickly. It makes sense because when you come from a world of denial, everything for you is urgent and you want it for yesterday.”
This guidance for activists is also accompanied by the invitation that Jose makes for people to join in and share “the responsibility for positive change”, especially to those of us who have been able to access opportunities to different resources. How do we start? Jose, as he promised, grounds it in the concrete:
“Start with something that probably you need, that is close to you, is tangible and that you can see a change.”
Conversation in Full
We spoke on zoom and then revised the transcript.
“Everyone's afraid of what's going to happen”
Peter: You've been travelling to Germany and Qatar and many other places trying to get governments and international organizations to pay attention to disability issues. How's it going?
Jose: We are living in such a turbulent times. It doesn’t really matter the region that you’re in, everyone's afraid of what's going to happen. People are uncertain about the future. When you live in times of uncertainty, you try to reduce your exposure, to home again and be as safe as you can. In that context, I think the disability agenda can be affected.
At the same time, people want to have good news. The only thing that can push you forward is that you think there is a better future. By trying to include disability issues in different agendas, that can be good news for many. I'm not saying, of course, anything related to charity or social responsibility or corporate responsibility. But being more aware of the needs of others, like persons with disabilities, being conscious of the challenges that people are facing, can make you take different actions that bring good news.
That is my feeling. A lot of uncertainties, but a lot of hope and a lot of need for good news.
Showing people they can be part of the change
Peter: Your work deals with high-level policy and complex bureaucracies. How do you advocate with them?
Jose: There are still a lot of people that have different understanding of inclusion. Not the understanding where the person with disability is the center. What motivates me to talk to governments, to talk to high level officials, etcetera, is to show that they can be part of this change. They should be part of this change and that what we are talking about is possible. It's a matter of how we harmonize resources and political will to get that change that I'm talking about.
I try to confront people with the reality in front of us. If you don't know what the reality is, how can you change it? Once we frame the conversation through bringing what the reality is, the next element is that you can be a partner to people with disabilities to change that reality. The element that I always like to share and not to convince people of, but at least to share, is that the reality that we are trying to change will bring better things for all.
This can have different forms and shapes. Your language, your tone change according to who you have in the room because there are definitely differences among who is responsible, who is the most responsible, from social obligations to legal obligations, to whatever type of obligations. In the end, it's a matter of being willing to change the reality.
I avoid talking about my personal experience. I'm a bit skeptical of building the case for the movement from my own personal experience. I don't even know if my personal experience is reflective of the challenges that people with disabilities face.
I think my personal reality allows me to be clear on what is the reality of most of the people with disabilities. I always like to build a case from that concrete reality and invite people to be part of the change.
Choice as a foundation for change
Peter: Something running through your advocacy messages is the element of partnership and people’s choice. Can you tell me more about how you see choice and agency?
Jose: I don't know if the right word is responsibility because I think that the connotation of responsibility sometimes can be turned negative. An opportunity to be part of the change. Beyond legal obligations, beyond political obligations, beyond financial obligations, there is always an opportunity to be part of a change.
I don't think that I would be doing what I do if I didn’t believe that a change is needed. I know that the change that I have dreamed of will never happen. I'm just trying to get closer to that change or to the positive effects of the change.
I’m more interested in the change as process. Through being exposed to people who think differently, who do things differently also makes you think differently and interact differently. Keeping in mind that I have a good change to work for, but the process, the way, the path to change is equally enjoyable.
Of course the most extreme situation is if you are forced to live in an institution. But if you have to pay extra for your transport to go to meet with your friends because the local transport is not accessible, that is also a lack free choice. Of course, there’s no comparison between being able to go to a party and what people with psychosocial disability experience living in institutions.
But in the end, the denial of free and autonomous choice, of decision-making, is what should make us all pursue change. To respond to your question, for me, change has a precondition of giving the chance to people to freely choose what they want to do. There is no possible change without the right to freedom.
A common root: getting support from disability organizations
Peter: It’s interesting seeing the process of change as vital to us as the result. I guess it’s partly because the process of change is of people realizing their choices, realizing their dreams, transforming themselves as individuals and as groups. You've struck on something that's a beautiful being part of the disability community, to be able to witness so many people doing that.
Jose: I see ourselves as a social movement. I think we started by trying to cover the absence of States [governments]. We all have the common root of going to disability organizations to get what we couldn't get from who was supposed to be responsible to provide services and support. We have been ambitious to transform that first connection with the disability movement into a political movement.
Peter: You mean transform these relationships that are supporting people in day-to-day lives into something that's much wider?
Jose: Yes and impactful. We come again to the right to choose, the right to freedom. This lack of free decision making processes made us think that we need to be the leader of the change if we want to see something improved. That’s why we didn't stop, or many of us didn't stop. We got what we went to the organizations looking for, and we took that flag and carried it out in different ways.
Tensions in the movement and representation
Peter: I am glad you brought up the disability movement. Both you and I are in quite institutional parts of the disability sector. A lot of your work is deep into the establishment, with UN meetings, with governments. Do you see tensions between some of the institutions that are representing disabled people and that social movement side?
Jose: Saying that I don't see the tensions is basically ignoring part of the reality. I would say one of my developed skills is to be able to read quite effectively different realities. I do see tensions, and sometimes we perceive those tensions as barriers for us to work together. But actually I think that those tensions are part of the DNA of the disability movement as any other movement. Why should we be different from other movements?
Peter: What you mean by it being part of the DNA?
Jose: Living in tensions, coexisting with tensions. We are part of a political movement with interests, different interests, money behind, power behind, reputation. Why wouldn't that be part of a social movement of a person with disabilities if that is part of the daily conversation of other movements?
The fact that those tensions exist speaks to the fact that we are definitely creating something big or we are pushing for something important. One example is representation. Are the organizations that lead the conversation around persons with disabilities enough representative of the movement?
Peter: Good question, I was going to ask you that. Are they?
Jose: In my opinion, yes. But the tension in representation makes those who believe that the organizations that we currently have are representative [should] do our best to be representative: and that we don't claim to be representative by default. Those who do not believe that the existing organization infrastructure is representative of the movement, have the role of helping us to know what is not good enough, what is wrong.
Living in tension is not a bad thing. It’s part of the movement, the reality, the process. It makes us better.
We will have to play two games from now on
Peter: Let’s go back to how we started this conversation and reflecting on turbulent times. There's this very strong association between inclusion and resources that might play out in the economic crisis that the world is going through. It can lead to a step back in inclusion.
Jose: It’s important to clarify. If inclusion was only about resources then inclusion wouldn’t be as hot a topic as it is in many more advanced countries. Resources are needed to be more inclusive, but that's not enough.
Inclusion requires resources. Let's say it. Why do we have to say that if you're poor, but you have good will from your teachers, you will be included? No. You're going to be included in a different way or at the expense of the efforts of your family, for example.
The second thing to say is that inclusion is more than having resources available. With the use of technology we believe that inclusion is all about allocating more resources. But it's about the process again. It's about how we start and where we get to.
The economic crisis that we are experiencing and that we will experience more and more will definitely impact on the inclusion of persons with disabilities. We as the disability movement will have to play two games, from now on, and I would say for the next five or ten years. One is to create better opportunities, and the other is, at the same time, to ensure that what we’ve achieved doesn't get lost.
These two games require different skills and understanding of the reality. We need to continue expanding our frontiers but at the same time ensuring what we achieved does not get lost.
Peter: Unfortunately the experience in the UK over the past 10-15 years shows how important that second game is and how trying to respond to it can send you backwards in messaging. You have to talk about need and how badly we'll do if it's taken away. It can really take you off of rights.
Understanding the progress that's been made
Peter: A lot of achievements on disability are at quite a high level and not necessarily reaching the lives of people with disabilities. How do you reflect on the different levels change has happened on?
Jose: If you look at the change from a holistic point of view, there has been a lot of progress. You can see it in many countries, many of the organizations that are fighting for the rights of people with disabilities are now better equipped to advocate for inclusion and at the same time many of those organizations provide basic services that otherwise we will not have access to.
Change takes time. The urgency that we see and that we have been talking about on this call makes us always anxious and feel that we are behind on things. If you see this from a holistic point of view, things that are currently impacting on persons with disabilities are possible because we discussed disability many years ago.
I'm not saying we should sit back and relax and wait, but to be aware of the time that social change requires. I don't think that is by accident that the Convention [on Rights of Persons with Disabilities] has the concept of progressive realization. We cannot be worse than we were before. For many of us, we started so low that any little improvement should be seen as the roadmap for improvement, for progress.
What is concerning, is that you and I cannot talk in five years’ time and keep talking about the same things and concluding that no progress have been made. That's why I was telling you about these two games that we have to play in these turbulent times.
Peter: You're saying we need to get better at seeing the progress and sometimes the progress in terms of that second game is about defending what we have won. You can be in the same place and you've won many battles because you've defended where you were.
“We need to perceive ourselves as constantly moving”
Peter: I think a lot of what you're saying is inviting us to be clearer those tensions and to avoid getting too frustrated by them.
Jose: We need to perceive ourselves as constantly moving and probably Peter, you and I are talking from the comfort of our house and with basic needs fulfilled, and I'm sorry if that doesn't describe your situation. However, I would like to have more things to be more included. Of course, they are different from the needs of children in Argentina.
We need to focus on what we see as progress. What is changing, what is moving, what is improving? Sometimes we are too hard on ourselves as activists wanting to change quickly. It makes sense because when you come from a world of denial, everything for you is urgent and you want it for yesterday.
A good example of what I'm saying is that the fact that we are discussing representation is already a symptom of progress. If we were not smart enough to make the movement grow to the level that it has grown, we would potentially be talking about anything else but representation. The fact that we are now fighting to access resources, positively fighting, constructively fighting to claim who is more representative, who is more effective, would the change be bottom-top, or top-bottom, etc. It's an example of the progress made.
Sharing the responsibility for change
Peter: I appreciate this chance to reflect together. To close out, Jose, what are final reflections that you'd like to share?
Jose: First of all, thank you for the interview. I really appreciate it.
I am by nature a positive person, and I would like to clarify that as positive, but responsible. I am not naive to say that that change will happen without me pushing for it. I think anybody who has decided to be an activist has the DNA to not feel comfortable in the situation that we are in.
I would like me to be more comfortable and comfort here means inclusion. At the same time, I see my brothers and sisters with disabilities even further out from what I think should be a minimum level of inclusion. This makes me be positive, but responsible for the change.
I would like to share that responsibility with others. The more we share that positive responsibility to promote change, the more effective we will be. You cannot expect that a mother of a five year old child who cannot access education will be an advocate. It’s already too much that she has to deal with.
There is another part of the movement, people that have experienced that and have the chance to live a different experience and have opportunity to access different resources. Those are the ones that have to be more positive, responsible for the change.
“Start with something small, close to you”
Peter: Many people would agree with you, but they might not see how they can contribute to change. Is there any message you would share if someone feels that way?
Jose: I don't know, and I don't know if anybody will know what is the best way to start. My answer would be to start with something small, close to you and tangible.
My first experience with an organization of a person with disabilities was when I wanted to read a book, not even recorded by my mother, by someone else. My mom had to record the textbooks for the school. How can I ask her, on top of everything to read literature. I went to the local library and I said, "I want a book," and they said, "There's no book. Let's do something." I didn't start it. I met with people who had started to record books for blind people.
Start with something that probably you need, that is close to you, is tangible and that you can see a change.
Peter: That's a beautiful way to wrap up, Jose.
Jose: Thank you very much, Peter. Interviews are part of the advocacy.
Many thanks to Jose Viera for granting this interview and to Aliyah Esmail for setting it up. Thanks also to some edits from Áine Kelly-Costello and help in my preparation from Greta Gamberini, Elizabeth Lockwood, Stefan Tromel and Nick Corby.
Thanks to Sightsavers and readers for the support that powers the Debrief. And to you, the reader, for getting here.