Transcript of Talk by Michael Stein
Go Back Delivered By:
Michael Stein
Harvard Law School Project on Disability
June 18, 2021
Thank you for having me and thank you for allowing me to review an earlier version of the report.
One thing that struck me in reading it and hearing my co-panelists — is just how modest and understated the report is. Some of us have been waiting for this kind of data for a long time. It is earth shaking and paradigm-shifting. A big congratulations and many thanks for enabling this work.
For those of you who are hopping around through side sessions, it has been repeated over and over again, by States, NGOs and others, that the need is strong for rigorously developed and comparative evidence-based data.
So this is really important. It lays the groundwork for a lot of collaborative and real world-impacting work. I have been in 40-something countries, which of course pales to others, and ministers invariably ask for data.
Some are more genuine than others. Some do so to point out that they don’t have the data–and because they don’t have the data, they are unable to do the work that they agreed to do through human rights and other instruments.
But some are genuine in this respect and are asking for help.
And the same is true for various development agents. So, having this kind of data available — data that is rigorous and stands up to scrutiny and is comparative – is invaluable because states and development agencies like to compete with each other on how well they are doing.
I am also reflecting on how this data is going to enable other aspects of programming and create synergy.
One prominent example is the sustainable development goals and specifically the work that UNICEF has been doing on mapping and disaggregating children with disabilities and their educational inclusion or exclusion.
But I am also thinking more broadly on how this kind of foundational data is going to intersect and enable programs under the SDGs. No longer can states say, they just don’t know how many disabled people they have.
I also believe that having this kind of basic and helpful data, can enable the work of the CRPD committee, which often struggles when reviewing state reports on what is going on relative to the disability community.
On the very easiest case, it is a matter of looking at an incidence of disability percentage within a country and saying: “you know what, the resources you are spending relative to the population are not sufficient” and being able to say that in an empirically rigorous manner.
Some countries have until now, despite The World Bank estimate of 15 percent, operated under the assumption that the disability population is under 2 percent. I think that is biologically impossible. Having these numbers is helpful in this most elemental way.
It is also important to recognize that human rights are cross-cutting. The report pulls in multidimensional poverty and has a multi-dimensional dashboard. I hope it goes farther.
But even the basic idea of the connection of disability and poverty and its effects — and its effects on other individuals facing multiple forms of discrimination is so important.
To come back to the word synergy: Charlotte spoke about how the World Bank is working on many data-related questions. And the synergy, between data, and how they all intersect and build on each other is obvious.
This work is important and exciting. I will end by being provocative and note that — we still have challenges on the process of asking these questions. Even when questions are made uniform, either through national household survey or census, at the point of contact, whether in person or through the telephone, the implementation of the questions leading to the culling of data requires self-disclosure and asking questions in a culturally appropriate manner. And we have had various stories about these over the years. In Yemen, in the census, there was the question: “Does anyone in your household, Allah-forbid, have a disability?”
Or in South Africa, not wanting to ask about mental health, on the notion that it will insult certain individuals. Bangladesh did a national household survey in 2007, after the change back to civilian government, which USAID was supporting. They came up with 5 or 6 percent prevalence rate. The people we worked with, who went into the Dhaka slums, were coming out with rates of 11 to 13 percent. We came to the conclusion, that having someone from Bangladesh, speaking the language and preferably with a disability, asking those questions, resulted in dramatically different numbers, than you did having white male Americans knocking on the door and asking the same questions.
This brings us full circle back to Jose’s point. We need to have people with disabilities involved in the culling of this data and involved in the creation of these datasets. Hugely important.
Finally, there is also the philosophical question of: How do we figure out in cultural formal ways, the difference between disability, impairment and handicap? And how these terms are reflected in the data? Are there certain conditions, despite the ways that they are being considered that some people don’t recognize as disability? Margaret spoke to some of these issues.
So, I am very much looking forward to next year’s iteration. It is a marvelous project. I am so glad to support in any way possible the development and moving forward of this initiative.