Hi, we are Arezoo Talebzadeh and Kaveh Ashourinia, and this is our podcast on inclusion.
Quantization is an independent project with the support of the Inclusive Design Research Centre at OCAD University.
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Welcome to the eighth episode of Quantization. In this episode, we have Jutta Treviranus and Marcia Rioux. They are talking around one core question which is how do we develop indicators that come from the ground up?
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Jutta: OK Kaveh, if you could give us a signal that we can start, that be great!
Kaveh: Sure! But first a brief introduction to our guests.
Dr. Jutta Treviranus is the Director of the Inclusive Design Research Centre (IDRC) and professor in the faculty of Design at OCAD University in Toronto. Jutta established the IDRC in 1993 as the nexus of a growing global community that proactively works to ensure that our digitally transformed and globally connected society is designed inclusively.
Jutta: OK, wonderful!
Marcia, it’s wonderful to have you here, and of course, I’m going to ask you a bunch of questions.
Kaveh: Dr. Marcia Rioux is a legal scholar with extensive experience in community based participatory research in the areas of human rights, health and social justice, particularly around international disability rights. Dr. Rioux is a Distinguished Research Professor in the School of Health Policy and Management and teaches Critical Disability Studies and Health Policy and Equity at York University in Toronto, Canada.
She is the Director and PI of Disability Rights Promotion International, a multi-year group of projects to monitor disability rights (including employment rights, indigenous rights, socio-political rights and other areas of rights) nationally and internationally. She is currently working on developing Indicators under the CRPD (recently released The People’s indicators) and the SDGs that recognize the importance of the input of grassroots voices in the way we measure progressive realization. Dr. Rioux has lectured throughout the Americas, Europe, Africa and Asia. She has been an advisor to federal and provincial commissions, parliamentary committees, and international NGO’s as well as United Nations agencies. She has edited a number of collected volumes and more than 70 book chapters and articles on disability rights. She has also been a visiting scholar and professor at a number of international institutions. She was made a member of the Order of Canada in 2014.
Jutta: But the first question I wanted to ask you and something that I ask lots of people is what do you currently most passionate about? What is something that either keeps you up or gets you up in the morning? Something you’re working on, chewing on, whatever?
Marcia: It’s a wonderful question actually because, as you know, Jutta, you always have two or three things that are burning and keeping you moving, getting up in the morning and stewing all day. But one of the things I’ve really been thinking a lot about is how do we develop indicators that come from the ground up? The traditional indicators for international agreements like the Convention on the Rights of the Child or the Convention of the Rights of People with Disabilities or the Convention on the Rights of Women, almost all of those are being developed from the top down, and they don’t, therefore, reflect the ideas and the sensitivities and the interests and the understanding of people who are in the grassroots in their communities.
Marcia: So we assumed that inclusive education is kids going to schools in regular schools with the neighbourhood children. But that doesn’t mean very much if we go and ask kids what they think inclusive education is and they give us a completely different view. And that’s been, for me, that’s been one of the things that I really found challenging recently, is to try to develop indicators that really reflect the voices and the understanding, and the interest of people with disabilities themselves.
Marcia: I think we’re at a crisis now in those indicators for the Convention on the Rights of People with Disabilities for other conventions and for the sustainable development goals, because I think if we keep measuring using very crude measurement, we’re not going to move very far ahead and I think we’re going backwards in some ways in the disability movement for sure in the way we’re thinking about indicators and measures up what’s happening for people.
Marcia: If I can just attach that to one of the big issues is the north-south dialogue which absolutely has to be changed in the south-north dialogue. So thinking about what are the indicators going to be for these kinds of big millennium sustainable development goals, multi-millennium sustainability goals, then I think about, well, who’s designing what the indicators are and the indicators are coming from the north. And we need to have a south-north dialogue if we want to really be able to understand what’s happening at the grassroots.
Jutta: That resonates very much with some of the things I’ve been thinking about because I think to some extent, the fault lies with us as academics and as researchers. The research methods we’re using are all biased towards the norm, the average. So it’s not just a north to south, but it’s also from the middle out or from the largest to the smallest type of thing. And as you say, we need better indicators. We need more detailed indicators but what that also means is that we need to stop being so reductionist in our research.
Jutta: We try to find the dominant pattern and we miss and we exclude all of the individuals that don’t fit those dominant patterns. So it seems to be a pattern all over the place whether it’s within country, but also as you say, very much from north to south. We’ve got these large data sets and if you don’t fit into that data set, then it’s such a struggle to try to have your view asserted. And I agree with you, within accessibility, we’re doing something very wrong because by virtue of creating these categories, these large groupings of disability.
Jutta: Disability is about diversity. It’s this jagged spectrum. And then we create these boxes that we tick off, blind, deaf, et cetera, et cetera. And there are so many people that don’t fit well within those boxes. And so people fall through the cracks and the tragedy of that is by promoting that view of accessibility and disability, we’re making it even harder for anyone that doesn’t fit those boxes.
Marcia: We’re counting things but we’re counting … We’re not even worrying about what we’re counting. So we’ve decided that a way of determining inclusion in education is how many kids go to schools. It’s not about how many kids learn which is the only relevant factor at all, but it isn’t even there. We just count the numbers.
Marcia: So if you say how many people have houses, that has nothing to do with having a home or having housing with dignity. It’s simply having a box around you.
Jutta: I love that story that you told that, you should tell that story again, of the woman from housing, yeah. That’s such a powerful example.
Marcia: She’s an incredible woman. She’s from Jordan and she lives in a refugee camp. And we were doing a round table with a number of women who’d come in from the refugee camp, fairly carefully monitored until we asked the man who had brought them in if they would leave. And so they were talking a bit about their lives.
Marcia: Their lives aren’t so great in the camp. The refugee camps are not terrific. This is just outside Beirut, which is a huge camp that’s been there for 50 to 70 years. And this woman said that she wanted to tell the story of how she’d always lived in her parents’ house. There’s fairly settled housing in this particular refugee camp, and she’d always lived in her parents’ house and then her parents died.
Marcia: And her brother said to her, “Okay. Well, the house is mine now.” Of course, he didn’t have a disability and she did, and he was a man and she was a woman, so it’s clear why he got the house. And he said, “So we want you to look after our kids every day during the day, but you go home at five o’clock because you have a disability and you’re in your wheelchair and you’re embarrassing to my wife.”
Marcia: So he said, “I will build you in the backyard a small house 8 by 10, and it’ll have food and it will have water and all those things we’ll supply that. And so you’ll go back there and that will be your home from now on.” And she looked to us and she said to me, “You know, I’m in a wheelchair and there are two steps up to this house. So when I go there at five o’clock, I leave my wheelchair and I crawl up on the floor and I crawl around this house, and I find the food and I find the water.” But she said, “I think I am disgusting. I think I am dirty, and I want to die. And I want to know if you can help me to die.”
And I thought you know by any characteristic that we could name, they would tick off that she was fine. If we’re counting, then she’s got a house, a roof over her head. She’s got food. She’s got water. She’s got a wheelchair, so by any of our traditional methods of determining whether this woman has all that she needs, it would be yes. But she doesn’t have housing with dignity. She doesn’t have food with dignity. She has nothing. She’s dirty on the floor, of course.
And I think it’s one of the most clear examples I know of why we have to rethink what outcomes we’re trying to achieve so we can measure outcomes. We don’t measure inputs, which I think is what you’re talking about, what I’m talking about and what really concerns us. Some of it I think comes from the way we’ve traditionally defined outcomes for people with disabilities.
Marcia: So in the north, it’s all about services. Do you get the services you need? And it’s not services with dignity or services with autonomy or services that are equal to other people or the same kind of outcomes that other people get. It’s simply, did you get a service? Well, that’s not about people living in a way similar to other people in the society. I’m sure you run into this all the time.
Jutta: Yeah, of course. I think what we don’t ask is how are people feeling represented by the indicators, by the research, by this supposed services that we’ve shown to be statistically impactful or that we’re awarding in some way. I think it’s endemic of this sort of checkmark view of accessibility that these are the boxes to tick off, and if you’ve ticked them off, then you’ve done the right thing.
The issue is that accessibility and disability, what we’re talking about is not a one-size-fits-all type. People are disabled because there’s a difference and that difference varies for everybody. And disability isn’t necessarily the main defining characteristic of someone. It affects everyone but because people with disabilities are at the very edge of our society, they’re the ones that feel it the first and the most.
As you say, if you are a woman, if you have a disability, if you are in a society that values neither, then you’re going to be the first one to feel the effect of any crisis, to feel the effect of disparity if there are economic issues, health issues. Individuals with disabilities are at the very edge and everything we’re doing to serve or to make that better if we’re not going to the effort of representing people truly and locally and specifically what they need in that full diversity, then I think we’re doing a disservice.
Because the generalizations, the reductionism, the putting everything into this static tick-off boxes is really creating greater barriers because people will say, “Oh, I’ve made the effort. I ticked the box. What’s your problem? This is not about my not doing the right thing. See? I’ve done the right thing. Here’s my certificate. Here’s my award. Here’s my checkbox. Here’s the stats that show that my work is statistically significant and I’ve had huge numbers of impact.”
The more we can pile that up as justification for not addressing your needs as someone that doesn’t fit those categories, the harder it becomes for the person that doesn’t fit or that’s excluded. We’re creating a larger and larger wedge between someone that is experiencing that disability or is experiencing all those issues and the rest of the world. I don’t know if you have thoughts on that.
Marcia: No, I absolutely agree with you. I think there are things that are really important that I’d like to talk to you about. One is how much of this is driven by funders because I think a huge amount of it is driven by funders. So that if you look, for example, in the area of employment. I do some work in employment particularly in southern countries, the funders want you to say how many people did you get employed?
Not, did you get one person a good job, which would be a good enough statistic by any comparison since usually there’s nobody gets the job. But what do you get? How many people can you fit? So people do training. And they say, “I trained.” I listened to someone last week. “We trained 4,000 people.” And I thought, “Well, who cares? Train 8,000. But you’re talking about jobs.”
But again, the funder can say that they’re successful if they have projects in which somebody has done the employment training for 4,000 people but training programs for 4,000 people says nothing about jobs. It says nothing about the economy. It says nothing about the systemic conditions that need to be changed to ensure that people with disabilities get jobs, and sustainable jobs. Not jobs where they’re going to starved to death but they’re still going to work, or they’re going to sit in a park all day long because nobody really wants someone with disability inside the workforce.
Marcia: Where does the drive come to keep enforcing this reductionism that you talked about? And the second thing is I think the whole way this occurs is it completely misses the incredibly innovative ways of looking at issue. It’s incredible. We can use what’s happening in the field of disability to actually address all kinds of issues, but it’s not happening.
Marcia: It’s not happening because as you say, there’s a bigger and bigger wedge being drawn and these are the people who are the outsiders, and these are the people who are the insiders. You and I went through it 30, 40 years ago around women. Finally, it became … Well, we still don’t turn a hundred cents on a dollar but the reality is that it’s much better than it was. But there’s still somehow this block to thinking about if we can have, if we can open up systems the way you talked about them and recognize that everything has to be individuated in some way, then it’s a different world and it would be helpful to everybody.
Jutta: Yeah, I think we’re also … I love what you’re saying about funders because I believe that the entire competitive funding process is biased against diversity. It’s biased against complexity and innovation, and we have a more and more complex world. We’re really heading towards, I don’t know what, a major crisis. We’re not looking forward. Our view of the future is so short-term and it’s based on data from the past.
If we know of anything, I mean, it’s not the past anymore. We can’t learn these things from the past. And when you look at the funding process, the brevity that they require, I mean, you have a very short period of time to propose something. It has to be said in tweet-like language and there’s no way that you can then be talked about complexity or complex strategies for an issue because we have a peer review process, and peers are reviewing established individuals that are the peer reviewers are going to try to keep the status quo because it’s so competitive. Everybody needs to keep their own working.
Jutta: And so anyone that is peerless or is doing something innovative or new has an even larger barrier to cross over in order to get support.
Marcia: Well, and it’s interesting because it also is this … It so tends to be driven by the north.
Jutta: Yes, completely.
Marcia: So, the northern development agencies are very deterministic about what happens in the south. I always remember a friend of mine. I think he has had a DPI, Disabled Person’s Internationally. He’s from Africa, and I remember him saying to me, “There would never have been an institution in Africa except for your northern countries, because nobody would have enough money to build those institutions.” But they continue to build them. They continue to build segregated schools. They continue to build closed facilities for people with disabilities.
That’s not coming from the south, and it’s not listening to people who live in communities in the southern countries. It’s coming from funders saying, “Okay, this year our priority is employment. So what we want is we want you to have a project in which you will have an impact on 1,500 people.” So we teach another 1,500 people how to do a resume.
Marcia: These are people who already have five resumes because the funding agencies or the international development agencies from four other countries have already been there. So people are simply discouraged. The employers know you don’t even bother to look at the resumes because they’re all coming out of the same workshops and they don’t have … It’s not thinking about where are people going to fit into the future labour force instead of the current labour force which is something you’ve talked a lot about.
Jutta: We had a project where the metric for success was whether a youth forum service entrepreneurships, and instead what they did was they went back to school. And that was deemed to not be a success because of course, it didn’t meet the metrics. And a lot of what you’re talking about, I love your mention of what we’re doing and the types of changes that we think are needed would benefit everyone, all of these different crises that are out there. Because I think, we know and we know both from experience and from just having watched this field for so long that no good comes of excluding people.
The types of strategies that we know of to ensure that there is good prosperity that is going to not cause the conflict in the power struggles and the lack of sustainability and the lack of understanding what it does to the environment and to the community and the social components of the technology in a socio-technical practices that we have out there, it’s really disheartening to keep seeing that people need to relearn that lesson again and again and again.
Jutta: But you’re right. There are so many crises to think about that seemed to be on the horizon. One of them being jobs, and the thing that I find most disheartening is that the limited resources and then the time and energy that we have within a disability and accessibility community is being devoted to catching up to a place where society’s going to be gone from soon. I mean, by the time, [crosstalk 00:19:13] we catch up, everybody is going to have moved on.
And we’re going to lose out again because we’re pressuring individuals that that are facing barriers to employment to get jobs that are not going to be there. We are trying to get education that isn’t going to be useful by the time we’ve garnered that education. The society is moving on very quickly and the place that requires innovation and foresight and thinking ahead the most is our field of accessibility and disability.
My huge concern is that we try to play the game the way the game is being played within work right now, and that game is not of benefit to anyone. The work-life balance is completely out. We have most people that have employment are overworked, and then there’s a greater and greater number of people that are unemployed. It’s not a system that we want to participate in as it is currently designed, but I think in the process of pressuring for it to be redesigned, that would benefit everybody.
Jutta: I mean, to think about the types of supports, what makes people happy, what is profitable but also productive work from a person’s perspective, how do we have work that makes you feel good about what you’re doing?
Marcia: And what makes you feel good about work?
Jutta: Yeah, exactly.
Marcia: This is the question every time you actually ask people, what makes them feel good about work? It’s not whether their prime minister or president or premier or whatever, it’s not even about is it such amazing. It’s about I can go home to my family and I have status. I bring a paycheck home, therefore my mother-in-law … And this is a quote … My mother-in-law speaks to me now. That’s what I heard in Nepal. “My mother speaks to me, so everything is okay.
And so we need to know not our own metrics of why things make us feel good. You know why? You and I get pleasure out of our work is not important necessarily to somebody who’s living in Colombia or somebody who’s living in Buenos Aires or somebody who’s living in Nepal. It’s about what each person, where people find that kind of source of energy-related to work.
And when you were talking, one of the things that keeps coming into my mind is this whole issue around writing resumes. What’s so compulsive, this writing resume is everyone is training people in writing resumes. Number one, there’s nothing wrong with people with disabilities. There’s a job for every person with a disability in the labour forces of the countries around the world. This is bizarre. It’s not about we have to somehow train these people up to have particular careers. It makes no sense anymore than training you and I out wouldn’t be very …
And the other big one is job readiness, and I’m now saying to almost every audience I speak to, “Look, I’m really hoping that before I retire, someone gives me some job readiness training so I know what I’m supposed to be doing.” And I don’t know whether that’s going to happen but by getting people perfect resumes and training them in job readiness does absolutely nothing about the fact that there is no transportation.
We keep addressing the wrong issues. We need to actually figure out a way for people to be able to get to places of employment. They won’t need the resume if they can get there. And we’re now saying to people, “Look, before you go to the interview, key thing. Make sure you know which bus you’re going to take to work,” because that’s what’s really going to be asked. And that’s what’s relevant to people.
Marcia: But in the meantime we’re … Six weeks to learn how to write a resume which just makes you a discouraged worker. It makes you a discouraged labour force participant because you’ve already done resume, because the grants aren’t about innovative things. The grants are to do exactly what [crosstalk 00:23:26]
Jutta: And to fill out the reports and check off that we’ve done exactly what we said we did three years ago and the whole world has changed now. I mean that’s the-
Marcia: That’s right.
Jutta: There’s no opportunity for agility. There’s no opportunity to customize it to the situation and to react appropriately to things that are happening and to the people that you’re serving. You have to do the same thing.
Marcia: Well, one of the things you and I have talked about before just over coffee and lunch is the whole area of the way in which people are being asked to … And you mentioned it earlier too … ask to adjust to a world that doesn’t exist anymore.
So, jobs are an obvious one. I mean, we’re telling people to get jobs which are going to disappear in five years. So even if they get some kind of rational training or good training even, the jobs won’t be there. I mean, the restaurant jobs are disappearing. People use tablets now. There is nothing … The waiters are disappearing. I’m sure there will be some in the very expensive restaurants, but most of us don’t attend those and people with disability sure don’t. But those jobs will disappear.
Marcia: Schools are going to change enormously. We’re just not going to have the same kind of education as we’ve had previously.
Jutta: And even if you go through it when you graduate, the jobs won’t be there for what you’ve been trained for.
Marcia: No, and the assembly lines are disappearing because robots do a fine job and they’re faster and they’re more accurate. All these things are disappearing. It’s not as though they’re going to come back. We’re not suddenly going to see them again after we’ve trained up all these people with disabilities, so these jobs are gone.
Marcia: And anyway, they’re bad jobs and they pay minimum wages or less. I think there’s such a disconnect now and you’ve talked about this before, the disconnect between how we’re trying to change individuals and really what the systemic changes that are happening are. And we need to somehow be able to pull up together.
Jutta: Right. And it’s interesting because that that same phenomena is happening all over the place where, and I think that’s where all sorts of entities could benefit from the strategies we need to change as well. For example, I think to some extent the smaller universities like the one I’m part of were trying to catch up to the larger universities but thereby losing what differentiates them.
And the larger universities, they’re going to be gone from that position later on but it seems to be a very common pattern, so pushing towards not that competitive perspective but trying to infuse the whole society with a little bit more collaboration. I mean, we start the competition part in school and we were talking about bullying earlier.
Jutta: But I think a large part of bullying and a large part of many of the social ills that happened right from the beginning of school are our fault. I mean, it’s the parents, the educators and system that is pushing this competition as opposed to collaboration from grade one, from the very beginning. Of course, with competition, the more people you are better than or that you push below you, the faster you’ll rise. And so it’s endemic of an attitude that is not doing as well whether it’s north-south dialogue, whether it’s within education, whether it’s within jobs, whether it’s within financial disparity and economic disparity.
Marcia: And we’re seeing the cost.
Jutta: Yeah, exactly.
Marcia: In the universities now, at least in the northen universities and I can’t say in other. But in the north universities, the competition is now so great that what we’re seeing is the rise in mental health issues. Well, of course, because people can’t compete in that. It’s not about learning anymore, it’s about-
Jutta: It’s about the highest marks. [crosstalk 00:27:40]
Marcia: … getting an A+ instead of getting a B+.
Marcia: And so we’re moving in a very odd direction.
Jutta: Yeah. And that’s no longer the pleasure of learning or the joy of learning something and keeping that as a lifelong habit. It’s about let’s just get through this gruelling process and get the highest marks, which is really unfortunate.
Marcia: But this is … I think what I see in travelling and I’m sure you see this too, is the agenda is still being imposed from the north to the south because the money is coming from the north and going to the south.
Jutta: It’s a power hierarchy then?
Marcia: Yeah. And so somebody’s got this great idea of if we train people, then we’ll be able to increase the labour market. And we want to increase the labour market because that reduces costs and all of the other business case that goes along with that.
But I think it’s really important to think about why would we expect that things that work in the north countries are going to work in the south countries? They have different economies. They have different social structures. They have different economic structures. Why would we assume that?
Marcia: We certainly don’t necessarily look to other northern countries to say, “Well, we’re going to adopt that model entirely.” The situation is very distinct in south countries and the needs are very distinct but we’re still imposing [crosstalk 00:29:06] rehabilitation models which are somehow supposed to be universal. And there’s a lot of these things that are seen as universal solutions which clearly [crosstalk 00:29:18]
Jutta: Yeah, that this whole notion independence as opposed to acknowledging the importance of interdependence. And we’re always assuming that the south is going to learn from the north. The thing that I love when I’m travelling in the south is just these examples of where the south has solely progressed. They’ve dealt with … They’ve completely sloughed off some of the problems that we see as this wicked horrible complex things that we’re never ever going to solve.
And in large part, I think it’s often because there aren’t these ossified structure that they have to overcome. If you’re beginning from the beginning, then you can do it right and you can do it right much more smartly and much more locally appropriate than something that’s imposed from outside.
For example, one thing that I love is what Brazil and other South American countries have done in terms of academic publishing here. I mean, if you look at the US, it’s such a hegemony there. You have the textbook adoption process and it’s something with respect to printing if you require alternative formats, it’s almost impossible to get around the digital rights management while Brazil just basically decreed that no publisher who doesn’t give it for free in the correct format can enter the school system, et cetera.
Jutta: There’s more and more of those examples where it’s in fact the south that’s leading in terms of inclusion and designing for diversity and doing things that are progressive and that bring greater community prosperity rather than …
Marcia: There’s a wonderful story of a woman from England. She was doing a study in Sub-Sahara Africa women about 20 years ago. And she arrived. She has a big huge wheelchair. She arrived in this wheelchair and got off the plane. And she had brought, I think 20 wheelchairs with her because somebody donated 20 wheelchairs, you know how people are always donating wheelchairs.
And so she had these so that they were all sitting on the runway. And she realized she couldn’t move anywhere because the desert is not made for wheelchairs. This one woman, she said to this one woman, “Well, you want a wheelchair?” And she said, “No I didn’t. I asked for a wheelbarrow so my kids could push me to the women’s meeting. And I could go out every week and see the other women. I never asked for a wheelchair because I have no place to plug it in, and besides which it won’t roll on the desert.”
Marcia: I thought, “Well, isn’t that the perfect example?” It’s just completely missing the point. And really they got her a wheelbarrow and she was perfectly happy.
Jutta: Yeah, there’s another corollary in education there, the Smartboards. I don’t know how many communities I’ve been visiting where there’s the shrine of the Smartboard. You have a school which has almost nothing, but they have this air-conditioned clean sanctuary for Smartboard that’s sitting there all on its own. And you ask, “Has anybody ever touched it?” “No, of course not. We can’t.”
Jutta: And the condition upon which they get it is because they will provide this clean air-conditioned environment for it while the rest, all the classes have no air conditioning, I mean, are completely falling apart.
Marcia: And the answers to a lot of things that people with disabilities is not high tech.
Jutta: Yeah, exactly.
Marcia: It’s individuated but it’s not necessarily high tech. But we’ve gone into you know [crosstalk 00:33:04]
Jutta: Right, exactly. Yeah, I mean the whole, the cult of the widget and innovation as a widget, and the widgets are going to fix everything. I think luckily, we’re getting beyond that. I was at a number of conventions in Europe a few years ago, and after millions and millions of dollars spent and tons of technology created, the conclusion at the end of it was, “Well, it’s not really about this technology, it’s about the social implications of the technology.” So we need to reinvest the moneys within this particular domain or issue in what are the social implications.
Marcia: But it goes back to what we were talking about right at the beginning about, what are the indicators? How do we think about the indicators? One of the biggest things that we all recognize is that there’s massive poverty in the world and we need to address that poverty. The sustainable development goals, the first goal is poverty. It has to be addressed.
Marcia: But when we look at the indicators, the indicator is about whether we move the income that a person has each day from $1 to $1.50 or $1.25, which has nothing to do with when I say to people what does poverty mean to you. And it’s not about a dollar or dollar a quarter. It’s a very different almost emotional kind of, not necessarily emotional. That’s probably not the right word but a complex notion of what poverty means.
Marcia: The guy who got the job who was so happy not because he had a job but he had a mother-in-law who paid attention to him. He had a mother-in-law who respect him. It wasn’t about the $1 or the $1.50. It was about the respect he could gain from somewhere.
Marcia: And I think we have to go back and talk to people. I mean, we’ve moved so far away and as you say, maybe it’s because we’re in universities, I don’t know. But we moved so far away from finding out from people what things mean to them. What does it mean to learn?
Jutta: Quite often it’s the feeling of safety. Sometimes when you go into a position that doesn’t fit you, it just intensifies the lack of security and safety. You’re worried even more. The anxiety increases. There are so many ways in which we are … I mean, I talked about the cobra effect, the unintended consequence of over-simplistic solution to a complex problem. And I think there needs to be a corollary which is sort of the misapplication of this over-simplistic idea about what is going to serve everybody.
Jutta: And I agree with you that we need to rethink how, not just the indicators, but how we create the indicators. We need to-
Marcia: Where’s the source of our knowledge for the indicators? And we don’t have that. I mean, the SDG just came out. There were the SDGs, the goals and they were the indicators. And lots of people talk their way through it while that was going on but nobody was asking people in communities what their cent was.
Marcia: And I think we really need to move towards that quickly because-
Jutta: Like bottom up.
Marcia: … bottom up and we need to start to think about how really important it is. If we want to accomplish this, if we really want to address poverty and we really want to address gender issues and we really want to address some of these other issues that are in these something like the sustainable development goals, we need to have everybody on board.
Marcia: And you can’t get everybody on board if you’ve got a definition of poverty that means nothing to the person who’s poor.
Jutta: Right, yeah.
Marcia: It isn’t what the rich guy thinks about being poor is. It’s what does the poor guy think about being poor. And we need to shift that if we really are interested in thinking about where do we go forward, not just for people with disabilities but for all kinds of people.
Jutta: Yeah, and I think that the lesson in that is the unrepresented. We supposedly, within our research, within our indicators, within academia, we’re creating representations but we don’t realize that quite often our representations exclude quite a number of people. There are many people that are unrepresented by what we see as the cardinal picture of what a person should be or what they should like. And it is often an imposition of something that is a complete mismatch with where people are really at.
Marcia: But unfortunately if we don’t address this, we’re going to end up exactly the same thing we did with the Millennium Development Goals which is nothing happened. I think it’s a mistake when we have these global opportunities where all kinds of people with resources and capacity are willing to invest in making things better for people. It seems to me it’s incumbent from us to start to really address how we’re going to do that and what are those, how are we going to know whether that occurred or not.
Jutta: Yeah. It’s really critical that we’re effective now. We’re at this crisis point where things are really falling apart, so we don’t have time, I don’t think. And we shouldn’t waste our energy on things that are only perpetuating the disparity and that are perpetuating that imposition of something on a group and excluding a large number of individuals.
Marcia: We have a long way to go. But I think we can get there. I mean, I think we have enough micro-examples, regional examples, city example, country example of where it’s possible to move. But I think we’re a long way, and I’m sure you will say this as well when you look at the way funders are funding. They’re not funding towards looking at what do people on the ground say, what do they think, how do they define this issue.
Jutta: The funders need to take a risk. I think the inclination when things go wrong or when things are in crisis is to be more controlling. But that’s the worst thing. What we need to do is we need to allow people to be responsive, to trust people who are doing work from the bottom-up, the people on the ground because that’s the only way we’re going to get through this. It’s not by imposing some and increasing control.
Jutta: Increasing control reduces freedom of movement. It reduces that ingenuity and resourcefulness that people who have lived experience, people who are on a day-to-day basis having to respond, to survive, and to be agile. We need to give them the license to do that. And we need to trust people from the bottom up.
Marcia: And it’s not going to be a quick fix.
Jutta: No, exactly.
Marcia: But it’s going to be sustainable if we do it right.
Jutta: Right, exactly. Yeah.
Kaveh: It was the eighth episode of the Quantization. We want to thank Jutta and Marcia for accepting our invitation, and you all for listening to our podcast.
As always, Marshal Bureau is the composer of all scores for the Quantization. I want to mention another name, who is Bert Shire from the IDRC. He is always an essential help through the process.
For more episodes and more information, please check out our website, quantization.ca and come back for upcoming episodes.