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 Adhura H. Farouk, Senior Economist & Partnership Executive at Serunai Commerce.
00:00Hi, welcome back to Consider This. I'm Melissa Idris. Let's continue our conversation about the structural, social and institutional barriers that women and girls with disabilities face, particularly in the healthcare setting and particularly around sexual and reproductive healthcare, education and information.
00:30Joining me now is Adhira H. Farouk, who is a Senior Economist and Partnership Executive at Serun iCommerce.
00:36Adhira, thank you so much for being on the show with me today. I wanted to begin our conversation discussing a little bit about what people with disabilities, specifically women, experience in healthcare settings.
00:48The report pointed to a systemic lack of care and accessibility within Malaysia's healthcare system. I'm just wondering whether that has been your experience.
00:59What has been your lived reality as a woman with a disability in Malaysia?
01:04Okay, thank you, Melissa. First of all, I would like to thank Awani for inviting me to be here and all of the authors and co-authors of the research report itself.
01:14It's available on Datum website, when I'm mistaken.
01:17And to answer your question about my lived experience as a person with disability, specifically as a woman with disability.
01:24So, as a lot of people might know, I became a disabled at age of 18, meaning I was not born disabled.
01:32So, I have had experience of being a non-disabled person and I turned disabled.
01:36So, I know how to kind of like differentiate how being a non-disabled person and a disabled woman being treated in the healthcare setting.
01:46So, my lived experience is that when I became disabled, there was a lot of difficulties, especially on navigating how to be a disabled woman.
01:54Meaning, all of the daily living activities, such as wearing all of your necessities, wearing all of your undergoverments, just navigating through menses, just navigating through relationships, sexual health and reproductive rights, etc.
02:10That is something that has been and is still very challenging, not just for me, but also for a lot of women and those identified as women as a person with disability.
02:21So, but then, I mean, unfortunately, it's not something that is exclusive to my experience as a person with disability.
02:29It also applies to a lot of other women who are non-disabled as well.
02:33So, we're just pointing it out that the tragedy is not individual.
02:36It's something that is shared with across the board in Malaysia.
02:39So, which comes back to the fact that it is a systemic or a structural issue that we need to address through policy intervention, through systems design, redesigning systems and institutions.
02:55The study, another thing that I found interesting in the study was that it talked about this really consistent, a significant and consistent gap in terms of knowledge and access to sexual and reproductive health and rights.
03:08But among women and girls with disabilities, the study pointed that this is also prevalent amongst women and girls without disabilities, but more so with women who live with disabilities because of the lack, because of the stigma, because of the lack of, I think, support system around them.
03:31Maybe you can share a little bit what you think explains this significant and consistent gap.
03:39Okay, that is very much correct, Melissa.
03:42And I think this is mostly because when you come from a very marginalised group, either, of course, when you are a woman, you are already marginalised.
03:51And then you become a disabled, such as disability, refugee status, or even from an impoverished society, etc.
04:02It becomes, how do I say it, your systemic barrier becomes amplified.
04:11So, hence, as a woman in Malaysia, you already have limited access to sexual health and reproductive health rights because you cannot have access to a lot of other things.
04:25Like, for example, if you want to go for PCOS, PCOS, you want to go for things like a lot of other surgeries, a lot of other access to your reproductive health rights.
04:37It is an issue in Malaysia because of the sympathisation, because of the lack of access, especially.
04:41So, when you become a disabled, it becomes 2-fold, 10-fold, 30-fold, 100-fold, even.
04:47And this is because a lot of things, a lot of these systemic barriers happens because, structurally, these policies are made not to be inclusive of us in the first place.
04:59So, meaning that these policies are made from the perspective of people who are not in a position experiencing all of these things.
05:06So, that is why, as a person with lived experience, contributing to this report, even though I personally did not contribute to this report myself,
05:16but this report cultivates or utilises persons with lived experience expertise to actually point out that, you know what, this happens because you do not talk to us, you do it without us, you do it for us, not with us.
05:31Yeah, well, what then would you like to, on that note, I do want to ask you, what would you like people who have read this report?
05:43So, our viewers tonight, the policymakers who will have access to the findings of this report, what are you hoping they take away from it?
05:51So, what one single shift in terms of thinking or practice or policy would make the biggest difference in your life, for instance?
06:03Well, that's quite simple, actually, because even though there is no panacea, meaning there is no one-size-fits-all solution to everything,
06:10but to the viewers out there, when we are talking about accessibility, when we are talking about inclusion, it's always about that this tragedy is not individualized, it's not my tragedy, it's not your tragedy,
06:22it's our tragedy as a collective, it's our tragedy as a society of women, it's our tragedy for the generation that's going to come if you're not addressing this in a systemic and structural manner.
06:32And for the policymakers, when we are making policies, do include us in the decision-making table.
06:39I mean, it's not hard to include us when we are making policies, it's not hard to reach out and ask and actually, not just being in on the decision-making table, but also as one of the power holders themselves.
06:54So, do it with us, not without us.
06:57And that's my take, my final take for the viewers and for the policymakers.
07:01Could I just ask you to elaborate, how do you make sure that consultation, stakeholder consultation, is meaningful?
07:07Sometimes it's this box ticking that we see, right?
07:12When you talk about wanting to be involved in that process, how do you make sure that it's meaningful consultation?
07:21Okay, I mean, that is a very big question for me to actually answer this in a very short, in a very short span of time.
07:28Technically speaking, it is a very lengthy process where we consider a lot of values, a lot of variables, and et cetera, to make sure that box ticking is one thing, but to make sure that all of the perspectives are being considered.
07:41So, it comes from a perspective of not just empathy, not just tolerance, but also a lot of understanding and a lot of actually decentralizing and democratizing power to the people that actually goes through all of these things.
07:55So, yeah, that's kind of like my, my try to be a short answer for this, for your question.
08:00And very important.
08:01Adora, thank you so much for sharing some of your insights and your perspectives with us.
08:05I appreciate your time.
08:06Adora H. Farouk there from Surinaya Commerce.
08:09We're going to take a quick break here and consider this.
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