- 3 months ago
- #considerthis
Words matter. Especially in media and online spaces, the words we use about disability can uplift or they can stigmatise. To address this, the Content Forum has put forward their draft of Guidelines on Disability-Inclusive Language, which is now open for public feedback. On this episode of #ConsiderThis Melisa Idris speaks with Mediha Mahmood, CEO of the Communications and Multimedia Content Forum, and Hasbeemasputra Abu Bakar, Community Engagement & Lived Experience Advocate for SIUMAN, which is a disability rights collective, led by persons with psycho-social disabilities.
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00:00Hello and good evening. I'm Melissa Idris. Welcome to Consider This. This is the show where we want
00:16you to consider and then reconsider what you know of the news of the day. Words matter, especially
00:21in the media and online spaces. The words we use about disability can either uplift or vacant
00:29and stigmatize. Now to address this, the content forum has put forward their draft of the guidelines
00:37on disability inclusive language which is now open for public feedback. Today on the show we'll explore
00:43how language can either reinforce stigma or open doors to inclusion and why your feedback, your input
00:52on this review matters. So joining me on the show to discuss this further is Madiha Mahmood who is the
00:58CEO of the Communications and Multimedia Content Forum. Content Forum is an industry forum registered
01:04under the Malaysian Communications and Multimedia Commission. I also have with me Hasbimas Putra
01:09Abu Bakar who is the Community Engagement and Lived Experience Advocate for SIOMAN. SIOMAN is a
01:15disability rights collective 100% led by persons with psychosocial disabilities. Both of you
01:23welcome to the show. It's good of you to join me. Thank you. A big topic to talk about today
01:27and one that I have long wanted to. Madiha, thank you for bringing this to our doorstep.
01:33Can you talk a little bit about the disability inclusive language guidelines? What are they intended
01:41to do and who contributed to drafting them? Who were the stakeholder groups that were involved?
01:47Okay, so when we had the, I think the last time before when we had the content code revamped, right, Melissa, we were talking about that and one of the things that we did was to include the fact that media practitioners and everyone needs to have, needs to use inclusive language when we talk about persons with disabilities.
02:02disabilities. But throughout our advocacy work, we realized that it's not enough for us to say you need to have inclusive language. We need to explain what that is, because it's not really something that is common sense to some people. It's also not something that they can predict. And we've always been just like what you said earlier, words really matter. It matters what words you use, because that's how the persons with disabilities are then seen and how they are treated in everyday life. So we came up with this to make sure that we not govern, but we guide the media, we guide the content creators who are all the people with disabilities. So we came up with this to make sure
02:32all huge storytellers in the content ecosystem now on how do you include persons with disabilities into content creation. And one of the things that we made very sure is we cannot do this on our own, because otherwise, it'll just be another set of guidelines with absolutely no input from people who are actually going to hopefully benefit from it. So we started out with the subject matter experts. And Husby is one of them who were included in the working group to help us develop these guidelines. And I have to tell you that it was
03:02it was just so invaluable to have them because there was no way some of the issues that are now in the guidelines, we would have thought of ourselves. Definitely. Husby, talk to me a little bit about your role in the guidelines. Your how did you and Sio Man and other people with living with disabilities have input into the draft guidelines? So first off, I'd like to thank Content Forum for actually facilitating the process. And that's actually the answer to it. Content Forum actually
03:32reached out to some of us who were active in online spaces in terms of disability and asked if we would be happy, if we would like to be included in the working group. But even before that, we already had, I want to say, working experience together on certain issues like suicide decriminalization and how we should talk about suicide safely. So I think it was a natural evolution of that relationship. Before this, so were you happy that finally there was this
04:01guidelines for the guidelines for media and content creators? Did you see the need for there to be guidelines? Because previously there were there were none, right?
04:10Right. I don't want to say I don't I don't think happy is the right word. Relieved. Relieved. Long time coming. Yes. Because let me roll back and give some context. Disability inclusive guidelines are actually
04:25disability inclusive language is actually an international obligation. So we ratified the CRPD, the Convention on the Rights of Persons with Disabilities in 2010.
04:37And as part of that ratification, we rolled out the Persons with Disabilities Act. But let me explain what the Persons with Disabilities Act and the Convention on the Rights of Disabilities actually means.
04:53Yes. So the fundamental basis of the Convention on the Rights of Persons with Disabilities is the social model of disability. I'm going to read off the definition that we have right now.
05:06Persons with disabilities are those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society.
05:19I want to unpack several things within the definition. Yes, please.
05:23So there is a health element. So a sensory impairment whether it's physical, mental, intellectual or sensory, a person who has one of these issues interacting with various barriers, the result of that interaction is disability.
05:40The impairment is not the disability. I see. The interaction with inaccessibility is disability.
05:47And when I talk about, when the Act talks about various barriers, that may mean the lack of a ramp or that also may mean the lack of inclusive language that stigmatises disabled persons.
06:01So this is actually, this disability inclusive guidelines are part of our international obligations when we ratified the Convention on the Rights of Persons with Disabilities.
06:10It's such an important distinction to make. And I think you're right. Going into the definition reflects what it is that we're doing, right? So we have to be true to the clarity of the definition of what exactly is the disability and not the kind of public perception or the stigma around it.
06:31Madiha, because you've been watching this space, when you were laying out the guidelines or the draft guidelines, what was it that you identified as the need to address?
06:45So there is, I think, the absence of the guidelines is already one matter. But what was in its place? What was some of the common mistakes or the harmful tropes that you see in the representation of people with disabilities in the media landscape, both traditional and in content creation?
07:07Right. So, you know, we've always looked at the content ecosystem with broadcasters, advertisers, and they're pretty much very good in self-regulating in a way.
07:14We've seen sometimes scenes where persons with disabilities are made into jokes. That's one thing.
07:21But with the advent of social media, with the internet, with the fact that a lot of people out there are also content creators, we saw a bigger problem.
07:29Because these are guys who would probably not be exposed to what is ethical journalism, for example, if they want to talk about persons with disabilities.
07:36And that's why you see, and I'm using an example that we saw very often. A few years ago, there was a case where a person who was involved in an accident that led to several deaths happened to have an OKU card.
07:48Until now, in 2025, if you see news about an accident, there will be comments about,
07:55OKU card has become, in a way, an insult or a slur. And this is something that will, I mean, I don't want to talk over Hasbi, but this is also a conversation or a narrative that is harmful to the persons with disabilities community.
08:08And we also see people who, because they're leveraging as a content creator, they want the clicks, they want the engagement, they do things like, for example, what we've seen, they use the OKU toilets,
08:19and then because they think it's funny, they come out from the toilet pretending to be persons with disabilities, pretending to be cacat.
08:26And that is a content that is getting, that gets viral for sometimes the right reasons, which is people are mocking it.
08:31But at the same time, we feel that these are things that need to be addressed. Because when we talk about disability in content, it shouldn't just be the tokenism.
08:42You know, sometimes you see a scene and there happens to be a person with a wheelchair and that's done. No.
08:46We want to make sure that persons with disabilities are seen not as a token in content creation, but they are part of everyday life.
08:54But I don't want to say normalize it because it is normal. It's just not being shown or portrayed in media as much and as best as it should be.
09:02Hasbi, would you like to weigh in on that? And I also might just add, how would that authentic representation look like to you?
09:11Okay. Before I answer that question, thanks Mediha for bringing that up.
09:16Harmful tropes. Generally, besides what Mediha brought up, can I say the word porn here? Yeah, I think I can.
09:24So, inspiration porn. So, the overt romanticizing of disabled persons for just day-to-day activities, right?
09:32Right.
09:33The guy earning, someone selling ice cream who happens to be disabled is overtly, I'm not saying you can't celebrate disabled lives,
09:40but the overt romanticization actually distracts us from actually talking about what are the barriers?
09:48Why is this person having to do this?
09:50Rather than, so we don't question, we celebrate the success of the disabled person,
09:55but we do not question why this disabled person has to do this to earn a living.
10:00So, and the flip side is that, is that what Mediha brought up, so inspiration porn is one side,
10:06but the flip side of that is a stigmatizing coverage of disabled persons.
10:10So, I'll bring up another example, the person with the OKU Mental Card who got into an accident at the Pasar in Trembano a few months ago.
10:22And for weeks after that, there was a lot of hateful talk about persons with psychosocial mental disabilities.
10:31And these actually greatly affected the community as well.
10:35So, why I bring this up, while we are attributing unsafe driving behavior to a person because of the OKU Mental Card,
10:45we have roughly 10 million drivers on the road every day who don't have an OKU Card.
10:51And I would argue also practice unsafe driving.
10:55Yes.
10:56Concentrating, like focusing on disabled person actually distracts us from actually talking about our road safety record as well.
11:03A hundred percent.
11:05Within the community, talk to me about the diversity within the community.
11:12Because the PWD community is incredibly diverse.
11:16You laid out some of the different physical, mental, sensory, intellectual.
11:19When we think about how many different groups with a wide range of needs from mobility to sensory to mental health conditions,
11:27how do we then ensure that the guideline covers everything?
11:32That there is respectful language around all the different types of disability?
11:38And first of all, is there even consensus within the community about language?
11:43Because we often hear OKU, so Orang Kurang Upaya versus Orang Kelainan Upaya, Special Needs and the like.
11:52And the focus on language while important also actually detracts from talking about the real barriers like you mentioned.
12:00How do we think about it? How do you see it from within the community?
12:03Let me answer that first part. I try not to be too stuck in the terminology.
12:08The point where I give up on terminology is the point where it distracts us from providing access.
12:14Disabled persons who are rights-based advocates have consensus.
12:20Okay.
12:21And we are trying to get other disabled persons on board with the guidelines as well.
12:26Having said that, I personally do not want to police or speak over other disabled persons in how they choose to identify themselves.
12:34And I would argue that that is also part of inclusion and accessibility.
12:37Yeah.
12:38How you wish to be identified.
12:39Right.
12:40I will completely agree.
12:41But the disability inclusive guideline specifically using the terminology is important because it shapes how we interact with disabled persons.
12:50Are we looking at them as a medical problem to be solved?
12:54Or are we looking at disability as an outcome of how society is arranged?
12:58If we are looking at how society is arranged, disability as a result of how society is arranged, then the solutions present themselves easier.
13:08Was it difficult to navigate the different stakeholders?
13:12And you are right.
13:13Every community is not a monolith.
13:16Yes.
13:17There are multitudes within a community.
13:19When you are putting together a stakeholder consultation with all the different moving parts, what was that like?
13:27It was a very interesting adventure for me.
13:31Okay.
13:32Because I absolutely love the fact that they brought this up when we were developing the guidelines.
13:36The fact that yes, the Persons with Disabilities Act use Persons with Disabilities.
13:40So that is the one that we use as well.
13:42Okay.
13:43But there are segments of the community who prefer disabled persons.
13:45There are also segments of the community who reclaim the not so good terms to use on their own.
13:51So what they did was they told us we can put this as a baseline, as a compass for content creators and for the media.
13:57But the key principle is you must respect the person with disability.
14:01You ask them what do they prefer to be referred to.
14:04So if yes, the rule is persons with disabilities.
14:07If they say that I would rather you call me a disabled person or I prefer to be called special needs, then you respect that.
14:12So that's actually explicit in the guidelines.
14:15You ask the person what they prefer to be called.
14:17Okay.
14:18And does the differences in language come into play?
14:21So BM English, the different vernaculars that we have in the country.
14:25How does that work?
14:27Medea Hasbi.
14:28What?
14:29Yes.
14:30So some words, even though translated, may carry different weight in the different languages.
14:37So I've had some parents of disabled kids who tell me, I'm fine with a person with disability but I'm not fine with orang kurang upaya.
14:52I prefer orang kelainan upaya.
14:55So that's something to be navigated as well.
14:58Having said that, while parents are important, I would still defer to the child.
15:05The person, okay.
15:06The child, how would they wish to be referred to.
15:10And as they grow up, I'm quite sure that they will learn to form their older identities as well
15:15and maybe come to a new term that they wish to be used when referring to them.
15:21And I think it's also important, one thing that we did bring up was that the guidelines must be, the guidelines must move with the time.
15:31So they were mechanisms that we asked for where the guidelines could be specifically revisited if a certain threshold was made.
15:39So if members of the public said, I don't like this term anymore, can we discuss it?
15:46So this was an idea. And this is also part of accessibility because good accessibility doesn't arise in a vacuum.
15:53It's a result of an iterative process. So you start and you learn and you improve the processes.
15:59Because language change and social norms change over time.
16:05So the guidelines need to also be a sort of living document in a sense.
16:11What I'm also quite glad about for the guidelines is that for media practitioners like myself,
16:20I often have to go to other websites like the BBC or the AP style guide to look at how disability inclusive language is practiced there.
16:32But I know for many other people, the lack of having a kind of clear standard or clear guidelines have caused for many media practitioners to not include people with disabilities, the voices of people with disabilities.
16:46So having something to hold on to actually allows for more inclusion.
16:52When you see the participation of people with disabilities in the media being asked about issues that are not to do with disabilities, how would you assess the current landscape if I may?
17:05Are you being asked for your opinions on other things besides, you know, living with a disability?
17:13I mean, thank you very much for asking that question. I think it's not asked enough.
17:17Because I personally don't want disabled advocates to just continue working in disability.
17:22And I think it's very limiting. I think it's also very segregationist and approach to only think that...
17:27Let me just bring up an example. So I have a few friends with disabilities, one of them being blind.
17:34And he related to me that some of the microaggressions that he has experienced.
17:40So when he meets a new person and they find out he's blind,
17:43he must be able to sing.
17:45The stereotype of a blind person being...
17:48Okay, but however, having said that, I want to say this.
17:52Involve disabled persons in discussions about labour rights,
17:56Involve disabled persons in discussions about climate crisis because we are 16% of the population.
18:01I think we should be everywhere.
18:03I think it's very limiting to only ask disabled persons about disability.
18:07I think it's very stereotypical.
18:15Are the media in accessible formats now?
18:17I mean, recently we have had a push to include more closed captions,
18:22more sign language interpreters.
18:25Are you seeing a forward momentum?
18:28I want to be positive, right?
18:30Okay.
18:31So I want to say yes, there is some positive momentum, but there is more could be done,
18:39more should be done.
18:40I don't want to say more could be done, more should be done,
18:42because disability rights has been largely ignored segments for a very long time.
18:47Let me just bring up one fact that may help contextualize it.
18:53We have 700,000 registered disabled persons in Malaysia, right?
18:57As of beginning of this year.
18:59But the WHO and many other organizations estimate 16% of the population is disabled.
19:05Worldwide, there's over a billion people in Malaysia.
19:0716% is 5 million people.
19:11And that's not including persons disabled by association,
19:14care partners, family members, friends, right?
19:17We are only resourcing based on 700,000.
19:21We're not resourcing based on 16% of the population.
19:24All the OKU parking lots or the disabled toilets are based on 700,000 registered persons.
19:29So while there has been some progress in more inclusive messaging,
19:34more inclusive, let's say news coverage, we have sign language interpreters,
19:37it's barely a drop in the ocean.
19:39Barely a drop down.
19:41Okay.
19:42So the public review of the guidelines is now ongoing.
19:46Talk to me a little bit about what kind of feedback you're looking for.
19:50So for the people watching tonight who want to contribute,
19:55who want to have their voices included, how should they submit?
20:00What kind of feedback are you looking for?
20:01And talk to me about the parameters.
20:03We're looking at getting as much feedback from as many people as possible,
20:08from all stakeholders.
20:10Because from experience, we've realised that a lot of the times that we come up with these guidelines,
20:15there are several factors that we might not consider from the perspective of a media practitioner or content creator.
20:22We want to know whether what we are promoting here in these guidelines are something that's practical,
20:27what are the work situations that they think might be a challenge for them to adopt it,
20:32if it's a challenge, anything at all.
20:34And we want to hear more from persons with disabilities as well.
20:37I'd just like to tag on to what Husby was talking about when you were asking,
20:40you know, having policy making, et cetera, involving persons with disabilities.
20:45And I learned this from Husby.
20:46And this was when we, I think, first knew each other.
20:49And it really hit me.
20:50You usually say nothing about us without us.
20:53It should be nothing without us.
20:55So that's, it's very clear, right?
20:57So if I'm talking about guidelines for persons with disabilities,
20:59immediately tunnel vision, I need persons with disabilities.
21:02But because of that line, and it stuck in my head, anything,
21:05whether it's the content code review, if it's guidelines for, I don't know,
21:08alcohol, advertisements, whatever, we will still send to persons with disabilities.
21:12Because why don't we? Why do we only look for them when it's about them,
21:16when they are part of the community?
21:18And if I want public feedback, they're public.
21:21If I can just add on to what Madiha said, I think this is important,
21:24especially for the policy makers watching.
21:27The social model of disability actually is a very, I use it as a troubleshooting tool.
21:33It forces me, one, to look at, not the person, but I'm looking at lack of access.
21:39And also, interaction with negative social norms, discrimination, stigma.
21:46Using that social model lens helps me troubleshoot a lot.
21:50I mean, it helps me come up with sustainable solutions that does not stigmatise the person,
21:57but actually address the inaccessibility of the environment around that person.
22:01The idea is to create an enabling environment.
22:04Right.
22:05Right.
22:06Okay, so in the couple of minutes that we have left, can I ask both of you,
22:09what practical change you want to see?
22:11I mean, I know we want to change the structure,
22:14but in terms of kind of low hanging fruit and quick wins,
22:17Madiha, to the editors and the producers and the content creators out there,
22:21has been really because you're very active on the online space as well,
22:25to social media users, those who consume media and produce media.
22:30What content?
22:31What should they be doing today, tomorrow and forever
22:35to make sure that their language is more inclusive?
22:38If I may, we start with Madiha and Andrea.
22:40I would say make conscious choices.
22:42Whatever you're doing, whether you're producing a social media content
22:45or if you're an editor or if you're a journalist,
22:46make a conscious choice about the words that you're using.
22:49Instead of saying things like suffering from autism,
22:52maybe it lives with autism, whatever it is, it's in the guidelines.
22:55And I missed it out there.
22:56Whoever wants to give their feedback is on the Content Forum website
22:59and the public consultation.
23:00We really love to have everyone's opinion.
23:02But that is the biggest change I want to see.
23:05A lot of times we're rushing to put out content,
23:07make a conscious effort to know that these are the choices that you make
23:10that will affect the persons with disabilities community
23:12and make the right ones.
23:14I want to go back to your question earlier,
23:17what does authentic representation look like to answer your question.
23:21Yes.
23:22Authentic representation here in the media
23:23will be an actual disabled person interviewing me.
23:25Yes, I see.
23:26And to the media companies out there,
23:28start hiring disabled persons.
23:30That's something that you can do immediately.
23:32That's for me.
23:33Wonderful.
23:34Thank you, Hasbi.
23:35Thank you, Madiha,
23:36for both of you being on the show and highlighting this really important.
23:39I would encourage everyone out there to look at the Content Forum's
23:44Guidelines on Disability Inclusive Language.
23:47There were many things in there for myself,
23:49even that I learnt.
23:51There were new things that I hadn't considered
23:53and I would encourage all of you to look at it
23:55and go one step further, provide your public feedback on it.
23:58So that's all we have for you on this episode of Consider This.
24:01I'm Melissa Idris signing off for the evening.
24:04Thank you so much for watching and good night.
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