Consider This: Women with Disabilities (Part 1) — When Systems Don’t Adapt - Video Dailymotion

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A new study by the Datum Initiative and ARROW looks at the structural, social, and institutional barriers women and girls with disabilities face, particularly around sexual and reproductive health and rights (SRHR), healthcare access, education, and social stigma. On this episode of #ConsiderThis Melisa Idris speaks with Dr Vilashini Somiah, Senior Lecturer, Universiti Malaya’s Gender Studies Programme, and co-founder of the Datum Initiative.

Transcript

00:00hello and good evening i'm melissa idris welcome to consider this this is the show where we want

00:15you to consider and then reconsider what you know of the news of the day across malaysia women and

00:21girls with disabilities are still being dismissed infantilized and told that they don't look sick

00:28a new study by the datum initiative and arrow looks at the structural social and institutional barriers

00:35that women and girls with disabilities face particularly around sexual and reproductive

00:40health and rights healthcare access education and social stigma joining me on the show now is one

00:46of the co-founders of the datum initiative dr villasini somaya who from the from university

00:52sim layers gender studies program villa thank you for being on the show with me today you as the

00:57co-founder of datum initiative um co-led the research you were responsible for its design and development

01:04you looked at the data analysis and the final synthesis of the findings can we talk a little

01:09bit about um the need for the rip the research but also the particular approach you took towards the

01:18research hi mel thank you so much for uh having me today and it's um it's always a pleasure seeing you

01:25so you know in a nutshell um a lot of people uh sort of asking what it is that the datum initiative um does

01:32in the arena of research and i often tell them that um you know in a world where we're really

01:39hung up and we're so obsessed with big data a lot about big data does not inform us all we need to

01:45know about meaningful change in policy so uh the datum initiative essentially derives it's this whole

01:51notion that um a singular data is called a datum and sometimes it's really important for us rather

01:57than to look at data in its you know in its largest form to also understand um singular community

02:04centered participatory driven information uh that comes in a singular story so it's really about

02:11process uh you know the process of knowledge building um that focuses on marginalized communities

02:19um you're up close and being able to do that means um having an opportunity to speak to community members

02:25um through their single stories and their lived experiences through really in-depth qualitative

02:32interviews and this is why the datum initiative uh was born the whole idea is that we can only build

02:40big data when we pay attention to that term and that is essentially the approach to this research so

02:46we're treating data not in in as an extractive model but really reciprocal reciprocal and um we are

02:55you know trying to find ways to return that information in its most accessible form as

03:02information that can be processed and can be used for meaningful change and in this situation it's

03:07policy making okay well policy making specifically in the way it um responds to the lived realities of

03:16women and girls with disabilities talk to me about what you discovered what were the most urgent structural

03:22barriers that you identified through the research um if you could maybe summarize some of the co-foundings

03:27of the study thank you so much so you know um i need to start by saying that um when arrow first approached

03:36what do you call datum and that is co-founded between me and um another scholar dr benjamin law

03:42from monash malaysia um the the idea here was that we had very little information literature documents

03:50about um women with disabilities specific to their sexual and reproductive health and rights um there's

03:58very little that we have out there and we knew that the challenge was that the report would be sort of

04:03like a baseline for anybody who needed to use this in order to build greater pieces of work um larger

04:12forms of policy uh documents in order for us to get started because baseline essentially didn't exist

04:18that would mean that we would have to look into creating a report that worked that way so essentially

04:24what we found from the report was that a lot about the sexual reproductive and reproductive health and

04:30rights or srhr of disabled women in malaysia were essentially missing so what we did was we combined

04:38the legal analysis of um through these in-depth interviews and whatever little we had that was made

04:45available to the public that was publicly available uh and basically what we found was that although

04:51malaysia has signed on to um major international conventions like the convention for the elimination

04:59of all forms of discrimination against women better known as cdo we have another one called uh the

05:05convention on the rights of persons with disabilities commonly known within the community as crpd

05:10the research that we did found that the implement implementation is at best patchy is inconsistent

05:18and it's unfortunately often more symbolic than it is substantive so you will find women with

05:24disability um remaining largely excluded from a lot of the policy agendas and they continue to face

05:32systemic uh neglect in healthcare in education and employment at large these three issues are essentially

05:38tied to sexual and reproductive health and rights uh on an everyday uh basis so yeah essentially this

05:45research was really about centering their voices that seldom make it to national policy conversations

05:52uh but really it was about centering a lot of their how their experiences reveal where the law and

05:59institutions essentially fail uh in practice right um so just give me a couple of examples of um where you

06:09found the most urgent need for um intervention is and i guess what i'm asking is if uh policymakers

06:16are watching today what is it what is that you know evidence-backed message that you would like them to address uh based on your report

06:25right so you know essentially uh we're talking about structural barriers and the urgent need to

06:30identify structural barriers so policy makers if you're listening today or anybody who's working

06:36adjacent to policy making i think we need to understand three major things number one language is

06:42a very powerful tool and as long as we have outdated and ableist language within not just the legal but also

06:49medical uh systems uh there is an uh absence in the sort of way these women can have access and reliability

06:57on issues pertaining to sexual reproduction and their healthcare rights right and so as long as that

07:03number one barrier is there the healthcare system cannot fully accommodate with patients with disabilities

07:10the second thing that i need to put out there is that there is pervasive stigma when it comes to

07:17registering people under the oku or orang kurang upaya um registry so you know this often is seen as

07:24the diminishing their dignity it's opening themselves up to surveillance as long as that stigma um exists we

07:32cannot fully get members of that community to come forward working together with um health medical health

07:40care or maybe even um uh members of authority to sort of help solve this problem and the third issue we

07:47find is that uh employment opportunities remain scarce and as i said employment ties very closely to issues

07:54of sexual reproduction and healthcare rights because it helps them get the help they need and so as long as

08:01there is um this sort of tokenistic inclusion to have people with disability at work it really lacks any meaningful

08:09accommodation so when we look at these barriers we also have to understand that women living with

08:15disabilities is really about their resilience right they turn to digital tools or online communities to

08:20help them look for connection to get knowledge to seek empowerment uh but you know what our findings

08:27essentially found through these documents is that the scale of structural exclusion and the lack of

08:34genuinity um essentially meant that women with disability have to create alternative forms of support for

08:41themselves right well thank you so much uh dr villa shini sumaya from um and also co-founder of the data

08:50initiative we're going to take a quick break here and consider this we'll be back with more stay tuned

09:04this is

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Consider This: Women with Disabilities (Part 1) — When Systems Don’t Adapt

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