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 autistic, gender-disability activist, Beatrice Leong.
00:00Hi, welcome back to Consider This. I'm Melissa Idris. Let's speak now to autistic gender
00:15disability activist Beatrice Leung. Beatrice, thank you so much for being on the show with us.
00:21As we talk about this report, I'm curious to know what your observations have been,
00:27what your lived experiences have been in terms of the challenges, the specific challenges faced by
00:33autistic girls and women in Malaysia, as well as those with maybe non-visible, less visible
00:39disabilities. What unique barriers do women with invisible disabilities face, given that I think
00:47that sometimes conditions are really dismissed with comments like, well, you don't look sick,
00:53or, you know, you look physically fine. How do you explain that lived reality?
01:00I think my always cheeky response is, hang on a minute, let me put on my autism suit.
01:05But I think that's the core principle of the first barrier, right? The invisibilisation
01:12of how people perceive, not just autism, but generally women and girls with hidden disability
01:20is almost as if, like, we don't see it, so it doesn't exist. And I think that's what's dangerous.
01:26And on top of that, the systemic issue of autism in women is also rarely recognised. And especially
01:33in adulthood, we see them in a lot. And this comes from the gender bias when we do assessment,
01:38where we are still basing it on the old models where, you know, autism assessment is built on boys,
01:44boys on males. So it's very heavily data lead into that. So we are not learning what autism in women
01:51are yet. So we are missed altogether. And then the mislabelling becomes something so absorbed into
01:59this woman is difficult, she's lazy, she's mad, she's emotional. So we invisibilise it and see that,
02:07you know, this is not a healthcare issue, this becomes an emotional issue, right? And then
02:12sometimes when we need to make an appointment, the barriers to go and prove your disability,
02:19because then in Malaysia, the system is, unless you have the OKU card, it's very hard to fight for
02:25accommodation. So when you can't even get a proper assessment, you will not get an OKU card.
02:31So you just miss out on actually taking care of your healthcare altogether, of what should be
02:37your need. So there's a lot of things going on, healthcare barriers, culture framing,
02:42and, you know, the fact that, you know, simply become women are just invisible in the data as well.
02:49Right. Well, one of the things that I thought was really interesting, I wanted to talk to you
02:53from the report, was that the study highlighted how infantilisation happens, and this is particularly
03:01acute for adults with learning disabilities or neurodevelopmental disabilities. Talk to me a
03:08little bit about that, the way communication styles, the way sensory needs, masking abilities,
03:14all of that shape an autistic person's ability when they are in a healthcare setting, their ability to
03:21receive information, to make decisions, to give informed consent, which is terribly important,
03:29important. All of this in a sexual and reproductive health and rights context.
03:34And I think this is actually something that I really feel very strongly about, because when
03:42you infertilise someone, you strip away their agency. That assumption lens that we put upon,
03:49and this is especially over autistic and disabled women, because we tend to think that just because
03:55of someone has autism, the mainstream narrative is they are also intellectually disabled. And then we
04:01seem to assume that intellectual disability actually means someone doesn't understand. But actually, it's
04:08just a very different way of hitting markers in your comprehension of the world and how you respond
04:14to the world. So IQ is not a marker. And the assumption that's always this whole thing that they think that,
04:20oh, they are less than a person, they're not up to a certain benchmark, the norm, majority normative
04:27benchmark. I'm going to relate this to an anecdote that I recently had at a, at a, at a training that I
04:34went. So it was like a job employment training or trying to get a cert so that, you know, you can,
04:38I could be a job coach to support people with disability. And I was so shocked that one of the speakers
04:44just went on and spoke, repeated and reinforced a certain stereotype that the girls with disabilities
04:51are naive. They will inevitably be cheated by men. So it's not safe. We don't often want to put them
04:56in a factory setting because then they'll come back pregnant or they'll have issues with being
05:02guttile with men. So you put a lot of assumption when you place this kind of stereotype with people.
05:09And this is related to the sexuality of a woman with an intellectual disability or with a hidden
05:16disability. And when you mainstream this in how you support them, you're then also not helping other
05:23people understand that they actually, we mainstream this. So that infertilization in action
05:29has turned this abuse into placing the fault onto the woman instead of, why are you not talking about
05:35the men who are taking advantage of them? So where the same logic goes into, and then just a couple
05:42of weeks later, I go into another forum. So the same logic then apply because they were talking about
05:47HPV vaccination. Cirvical cancer is the only, only cancer that's preventable at the moment. And they
05:54were talking about how HPV is not reaching out widely. It's not going out. Why is it not being targeted
06:01to women with disability? Do you know that there's no such accessible program to help women and girls
06:07with disability access HPV vaccination? So there isn't a track that help us get there. Why do you not
06:14target there? And yet you go into a town hall and you repeat the same rhetoric logic that like, oh,
06:21we're not reaching new people. That's 16% of us here of the public. So that is how the infertilization
06:29translate into practice. And it really then ouster us away from.
06:35Right. So, so I don't mean, I don't mean that this is the labor is yours, but what would a genuinely autism friendly health consultation look like?
06:47For instance, if, if services were to adapt, what would that mean for what, how would that make a difference in your life?
06:55So it's not about being autism friendly. It's about being autism inclusive. I don't want people to be friendly to me.
07:03I want them to really be intentionally inclusive. So when we come with that mindset of inclusion, then we will rethink actually processes.
07:12processes. It's not the tools. So the barriers for women and girls, autistic women and girls is not the hardware.
07:20It's not the tools. More than it is about having calm rooms or sensory friendly is about how do you structure information?
07:28How do you give clear information out front? Are they in plain language? Do you, some of those who don't speak,
07:34some of us don't use speech, right? Are you providing avenues for them to communicate? Right.
07:40If the deaf community can have a sign language, why do we not provide similar assistive technology for an autistic person?
07:48Because even seeing your gynae is very, very confronting.
07:53If someone with an anxiety, because of an overwhelming environment, we should be providing the diverse communication method.
08:01And the other pet peeve of mine is we don't respect the privacy and consent.
08:07Because when an autistic person goes into any form of healthcare, psychiatry, and I've experienced this myself, right?
08:13You turn into a kid teaching case.
08:16Suddenly you become like, oh, we rarely see this autistic person who's advocating for our own help.
08:21Let me invite all my other housemen to come in and they just stand behind you.
08:24So I become, they become like spectators.
08:28And this had become a cultural norm.
08:30We don't practice asking that consent.
08:33And this is very much also a form of infantilization and ableism.
08:37So we need to change this mindset, right?
08:40And also we need to trust advocacy, self-advocacy.
08:45So it means that if an autistic woman tells you something feels off, respect that.
08:50Don't say that, oh, because you have a sensory sensitivity, so you're just, you know, you're just focusing on that one thing.
08:58But there must be something.
08:59So we rarely see this.
09:01We rarely respect that because we make that assumption.
09:05Beatrice, thank you so much for helping us understand some of these challenges that a person with, a woman with disabilities, particularly an invisible or hidden disability faces.
09:18Thank you for your time and your insights.
09:20I appreciate you.
09:22That's a gender disability activist, Beatrice Leong, wrapping up this episode of Consider This.
09:29I'm Melissa Idris signing off for the evening.
09:31Thank you so much for watching and good night.
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