“Without us, you won't move forward”

Dear Debriefers,

As with other social movements, the disability movement can end up dominated by those with relative privilege or power.

Here on the Debrief we've seen that play out in who is left at the margins of international discussions, how power is maintained through gatekeeping, and unchanging leadership disconnected from the wider movement.

That's why I wanted to speak to someone making broader coalitions around disability. Today's edition is my interview with Luciana Viegas, an anti-racist and anti-ableist activist from Brazil, and a founder of the group Vidas Negras Com Deficiência (VNDI), Black Disabled Lives Matter.

In this conversation Luciana urges the disability movement to open itself to minority communities. She shows how to put intersectionality into practice and to avoid it turning into a “monster”. And she shares how VNDI makes a coalition by bridging both the black and disability movements.

Talking with Luciana helped me understand better my own position within the disability movement, and how we can open up more widely the work we do.

About this edition

The Debrief can share diverse views on disability organising thanks to support from readers. Thanks to Anna, David, Jacqueline and Wanda for new contributions.

Peter Torres Fremlin is editor of Disability Debrief and is from the UK.

Centuries of silence

Luciana and I spoke on Zoom, in Portuguese. Here's our conversation, translated and edited for clarity and brevity.  

Peter: Tell me about how you started connecting with people online in 2020.

Luciana: When I looked on the internet for references, I found almost no references of black autistic women in Brazil. So I created an account to talk about my experience and so that when people searched they would find stories.

People started to identify with what I posted, and I received stories from black people with disabilities in general. So that’s when I started to understand it wasn’t just a question of the autistic community.

Peter: Were there common platforms to share experiences of black people with disabilities?

Luciana: A live broadcast invited two of us to talk about the problems of black people with disabilities. Every Friday we would sit there and talk. The people who run it were white people, and they started to limit our speaking time. We had half an hour, but then we got five minutes.

We got really sad and said, no way we can do it, we can’t say everything we want to say. It’s been years, centuries of silence, and we started raising this issue. That’s when, together in a group of six of us, we started VNDI. 

“Two movements, in one coalition”

Luciana: And when we came to write the manifesto we came across a very interesting dynamic: who do we want to represent? We want to represent black people with disabilities, people from the peripheries with disabilities, or just us, black people?

That’s when we decided that VNDI would be this intersectional movement. I think that’s what sets us apart, putting that into practice. We are a movement of black people, and people with disabilities. We are two movements, in one coalition. 

Peter: There is also the economic issue.

Luciana: That’s right. In Brazil we talk a lot about race because it is fundamental to inequality. The population in the periferia, outskirts, or favelas is mostly based on race.

After we wrote the manifesto we launched it – how cool. But then we stopped and asked where are the black people in the movement. Where are the black people with disabilities? Why aren't they looking for us? 

Maybe this is our fundamental question: where are the black people with disabilities in Brazil? So we did the research. These people are institutionalized, in prisons, in the favelas. They are inside their homes and cannot leave.

Survivors of a colonial plan

Luciana: Institutionalization is a colonial dynamic in Brazil in dealing with black people. Even though Brazil has rejected this passage of its history, there are still small manicômios (asylums) that care for people who do not have family, and mostly they are for black people with disabilities.

We’ve received many reports from black people with disabilities who are institutionalized, who are imprisoned, who are acquiring disabilities inside the prison.

Brazil is a country where, when a black person survives the prison system, they can acquire a disability due to police violence. There are black people with disabilities who are survivors of this colonial plan which resulted in death, torture and disability.

But along the way, no one talked about race and disability. The black movement is  fighting on these fundamental issues relating to violence and imprisonment of black people. And the movement of people with disabilities is founded by people who do not speak directly to the reality of black people with disabilities.

The traditional disability movement

Peter: Tell me about the disability movement, and how come it ignores the issues of black people with disabilities. 

Luciana: I don’t like to see it as the disability movement in Brazil doing this on purpose. It was an urgent movement, fighting for basic civil rights and the right to live.

However in the dynamic of being founded, the organisations were very connected to identity. For example, there is the community of the blind, of the deaf, of autistic people, or a community of people with physical disabilities. All of this will mark the fight and how strategies are thought of.

[Advocacy] wasn’t about disability in general. It was always about what my community needs. So that’s why today we have progress in architectural accessibility policies but not in other accessibility policies.

And who are the people who speak as people with disabilities? They are survivors, the ones who had more money and the possibility of living. Disability is very expensive. A wheelchair is almost the price of a house here in Brazil. Caregivers are expensive. For a while specialised schools were paid for, and expensive. 

All of this shows where the person who is talking about rights is coming from. Their speech is legitimate, but they are not speaking from the periferia. It’s common to see people from the traditional disability movement not understanding much about race issues. 

Peter: my own position is an example of this as well, in terms of having had more possibilities.

Putting intersectionality into practice 

Peter: Many readers will say they like intersectionality, but they might not have techniques to put this in practice. Can you give some guidance?

Luciana: Leave your ego at the door. This is important for people who are mobilizing and doing activism. 

You will have to let go of your ego, because without that you will not be able to sharpen your vision and deepen your view. It is not about the general hierarchy of oppression but deeper, to see that every person is able to access full rights. 

We cannot fight for a right or “negotiate” them in parts, or say “let’s only work for this population, because if it were everyone we would open up too much”. 

Peter: Can you give some examples?

Luciana: When we are “negotiating” human rights we are saying that the decision-makers make some decisions and then leave others to us. Let’s say they have five decisions, they make four and then leave the fifth one in our hands to fight over.

We need to think of strategies to break this. And it’s not going to be on a single front or a single fight. If you all do this in one way, maybe you won’t be able to break the structures. But if you involve different fronts, you can make progress. 

In VNDI, when a white person with disability joins, he has to get a training about whiteness. When they understand their ego and privilege they can have voting power. 

“We want to get into all spaces”

Peter: What is training on whiteness? 

Luciana: It would be us explaining to them the colonial process to which we are all subjected, including white people, here in Brazil. And when a black person who doesn’t have a disability joins, they only have voting power after going through a process of sensitization. 

They see they can no longer fight against racism, or only fight against ableism. They will disrupt inequalities in an intersectional way. 

We’ve used these strategies and it’s worked because we want to get into all spaces.

So when, say, we talk about care, about women, we are talking about it from several perspectives. We talk a lot with mothers and they say that as well as having a child with disability they are poor, black, and have faced oppressions that aren’t to do with the disability. 

Resisting hierarchies of oppression

Peter: Sometimes it can seem that intersectionality closes some conversations. But your use of it broadens connections, and opens up the possibility of people from different communities contributing.

Luciana: Exactly. I believe that we often discuss intersectionality in the wrong way, imposing a hierarchy of oppression. Where someone then has more authority to speak because they face more oppression.

It’s like we created a monster of intersectionality. So when someone comes down to VNDI and says they are suffering more violence we say wait a minute, and we look after the monster..

Peter: How do you distinguish between the different uses of intersectionality?

Luciana: Because when we talk about pain, we talk about our pain. This is something that social movements need to understand. Oppression isn’t just about systemic oppression but it has to do with your life, your experience. When I talk about racism, I’m talking about my father’s death too, which was because of racism. 

“Our work failed when we didn’t speak to this mother”

Luciana: We recently had a case at VNDI which mobilized everyone, where one of our members was institutionalised by her family, after the request of the primary health centre. We wanted to report the mother who did it, but she was just doing it on their guidance. 

This was a black mother, from the periferia. What is our work in this situation? Our work failed when we didn’t speak to this mother when she was thinking about institutionalizing her daughter. We didn’t approach this mother to tell her the problems with that.

Intersectional activism allows us to do this. If it were just a movement of black people with disabilities I would not be able to talk to this part of the population. How am I going to intervene in care policies and caregivers if I only talk about people with disabilities?

Fighting for the inclusion of everyone

Peter: I liked what you said about making room for white people with disabilities. I don't know if I can say that those in the dominant disability space imagined space for black people with disabilities. 

It shows some of the contribution of your work, that you are not proposing an exclusion to respond to exclusions, you are proposing new ways of meeting and mobilizing. 

Luciana: It’s also to do with a local context. How can we not welcome a white person with a disability who has a class issue? How could VNDI, which talks about freedom and collective liberation look at them and say “you have privileges”? 

And the argument we make with the black movement is completely different from the argument we make with the movement of people with disabilities.

To the black movement we say, stop, without black people with disabilities here you are losing support, losing people, to be able to push the system.

And to the movement of people with disabilities we say that your fight doesn’t make sense. You’re fighting for inclusion of everyone – why doesn’t that include black people? Who is this person that you’re fighting for? 

Understanding the need for a broader debate

Peter: It’s partly that you’re breaking the categories of activism that exist, right?

Luciana: We are doing a collective work, and understanding why we got here in terms of the movement of persons with disabilities. And that comes back to why black people with disabilities are not there.

It goes beyond privilege, or that you have to be a cool, anti-racist person. If you don’t think about it, you will also be co-opted by this system and oppressed by it.

When we talk about colonization or colonial thinking, we are talking about normativity. The normative black body [is seen as] being for work, a functional body. [These normative ideas also] tell people with disabilities that their bodies aren’t enough, that they aren’t fit for work. 

Until the movements understand the need for a broader debate, we won’t be able to reach a common denominator that challenges the structures. If we don’t get there then the strategies for change will come from the place of the white person.

And white people with disabilities have very different access, powers and influence than black people. The movement of people with disabilities in Brazil is small but it has good relationships with power. It puts white people with disabilities in a place that black people will never reach.

“Without us, you won't move forward”

Peter: Some of my readers have positions of power in the disability movement – and many, like me, have several privileges. Other things in my life were ok, but disability opened this space of exclusion. What would you say to people in this situation? 

Luciana: Some people have more opportunities. They face ableism, but they have the opportunity to turn the game around. Other people can understand that’s it’s just a question of ableism. 

But black and indigenous people in the Global South, we don’t have the opportunity to turn the game around, the opportunity for people to look at us and realise that we are human. We are seen as animals, in a very pejorative, marginalised and stereotyped way.

Understanding this means looking at the person who is fighting, the black persons with disability, and humanising them. Human rights are also about us. They are not despite us, or beyond us. 

When the disability movement demands rights at the UN they need to understand they are demanding this for many humans. We need to remember all humans, including those who are suffering from systemic erasure.

We need to see these people and ask them to come closer, to talk. These people have been marginalized, their stories have not been told. I need to hear their stories and ask what the stories say to me. The stories say it’s not just about me, it’s about us. 

We need to question these structures, and without that we can’t advance in human rights. We’re trying to unite movements that haven’t come together until now. We are saying to white people with disabilities that, without us, you won’t move forward. 

Without class, gender, disability and race together we will be compromising on our rights. If we have everyone together, looking towards a truly anti-racist and anti-ableist future, our rights won’t be negotiable any more. 

This is the point to invite white people with disabilities – who find they have more opportunities than other people – to build relationships and create opportunities for people from the Global South, and people with disabilities of African descent. So that they too can turn the game around, show their potential, beauty, individuality and culture. That way we all win. 

We deserve to know who our heroes were

Peter: These are beautiful words. Any final thoughts?

Luciana: One thing is worth saying. The identity of black people with disabilities needs to be rescued. That won’t be possible if we don’t learn, research, write and imagine these stories that were erased, right? 

We don’t know how many black people with disabilities there were around the world. How many resisted? Even in the stories of heroes, their disabilities are erased. 

The last and final request is that the international community be moved to seek out stories and memories of black people with disabilities. We deserve to know who came before us, who our heroes were.

There’s a gap in our memories. Recovering them is also so that I can tell my son that years ago people like you existed, and resisted. 

Outro

More from Luciana and VNDI:

• See the VNDI website for further information about their work
• Follow Luciana on Instagram or X.

Further reading. See further interviews on the Debrief for insights from other leaders in disability rights.

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Acknowledgements

The interview was translated by me, working with Google Translate.

Many thanks to Luciana for her time, insights, and patience with the time it took me to prepare this interview. And also for sharing the photo taken by David Nicholas, with Ford Foundation.

Thanks also to Catherine Hyde Townsend and Lauren Avery for encouraging me to speak with Luciana.

And of course the readers and organisations that support this work.