I’ve been a dwarf for 23 years now. I have Spondyloepiphyseal dysplasia, a.k.a. dwarfism, which comes with a wide array of fabulousness like bow-legs, osteoarthritis in the hips and weak joints. I was born adorable and normal but when I was 3, my parents noticed how my feet would face inwards when I walked, and that my legs were starting to bow. Since then, they jumped from hospital to hospital trying to find out what the problem was, until a doctor in UMMC (known just as Universiti Hospital before) made more sense than most.
There are a lot we don’t talk about in Malaysia, such as the usual sex, drugs and rock & roll. But one of the things we also don’t talk about is disabilities, more specifically – dwarfism. I’ve seen many Malaysian parents tell their kids to shut up when their kids ask me about my dwarfism and this is usually because parents feel more ‘uncomfortable’ than me, whilst in other countries, parents allow their kids to be around me and join the conversation.
In general people have made disability a taboo subject in order to ‘jaga’ our feelings, and this has led to a lack of empathy towards the disabled. Thus, I get some really ridiculous questions that I’m honestly tired of hearing. You can ask a dwarf many things, but here are 5 things you should probably not assume about us:
1. That we’re not real dwarves. (Huh??)
This is the most common question I get, especially on dating apps. My reaction is usually a groan followed by an eye-roll and ends with a facepalm. There are also people who TELL ME I’m not a dwarf, that I’m just a ‘petite’ girl. And I can’t blame them because I’ve seen Instagram profiles of petite girls above the height of 4’10” putting “A dwarf/midget!” on their profile, when in reality they’re just 5’2” and adorably cute.
I know everyone wants to be Thorin (dwarf from Lord of the Rings) because he’s hot… but he’s not real – I am. There’s also those wonderful people who love to ‘defend’ me from myself when I call myself a dwarf, like, “Don’t call yourself that! That’s not nice!” Stop. Please.
Besides that, everyone has it in their head that ALL dwarves look like the ones in The Hobbit or like Peter Dinklage. I had people tell me, “But your limbs aren’t that short”, or, “But your head isn’t big and disproportionate”.
A dwarf, as defined by the advocacy group Little People of America (LPA), is an adult with the height of 4’10” or under, as a result of a medical or genetic condition. Yes, the most common form of dwarfism is Achondroplasia (which is what Peter Dinklage has), but not everyone of us looks like him. I mean look at Amanda Loy (below), who is a bodybuilder. She was born with hypochondroplasia, a type of dwarfism where her physique remains in proportion.
2. That we’re straight-A students
The Asian culture of only scoring As also affects us dwarves. I always got compared to all the disabled people who got straight As and made the media, such as Quintina Tan Guey Juan who scored 9A+ and 1A for her SPM. Also, there were also the 3 Paralympians – Mohamad Ridzuan Mohamad Puzi, Muhammad Ziyad Zolkefli, and Abdul Latif Romly who got us 3 gold medals during the 2016 Summer Paralympics in Rio de Janeiro.
Family members will talk about them and how I’m also disabled but I can’t score straight As or get gold medals. Don’t get me wrong, their stories are inspiring, but Malaysians then have this perception that we’re all ‘beating the odds’, ‘strong’ and capable of scoring straight As. Everyone expects me to be this way because no one expected me to be a normal kid who very much liked watching TV more than she liked studying.
My father always told me that if I don’t work hard enough, the ‘normal’ kids will get ahead than me in life because all I had was my brains since I can’t do anything physical. It took me years to prove to my dad that getting straight As wasn’t the only way to be successful and get ahead of the ‘normal’ kids.
3. That our menstrual blood isn’t red
This is something a MALAYSIAN HIGH SCHOOL TEACHER asked my friend who also has a form of dwarfism. Apparently, because we look different, we also don’t bleed the same blood. Sheesh. Talk about the how questionable the Malaysian level of education is. If I got asked that question, I’d probably just tell them, rainbows and sunshine, and if it’s a heavy flow, glitter too.
Malaysians dislike talking about what goes on in our bodies, be it sex, period and how our genitals work. (Many women today still think that they pee from their vaginas. No, they do not.) Not only do we refuse to teach sex ed, but when schools have talks about periods, they make it more about how to NOT throw your pads in the toilet rather than talk about WHY period happens and what happens your body; the biology of it.
Yeah, we get free pads during those talks, but that’s the only really valuable thing we’re getting from those talks. I had to learn a lot about periods and my womanhood from interesting YouTube videos and websites made to educate girls.
Probably like most taboo subjects in Malaysia, people are just too uncomfortable to talk about it. To me, it speaks volumes about our education system when an educator assumes dwarves don’t even bleed the same blood. Do you even know how periods work, bruh? This is why we need to evolve our education system to allow discussions on ‘uncomfortable’ topics so our kids can grow up to be more effective educators and people won’t have so many ridiculous assumptions.
4. That we can’t drink or smoke
Many Malaysians believe that if you drink or smoke, you’re a bad person and disabled people are supposed to be ‘pure’ and ‘innocent’.
I understand that many health conditions may prohibit some from drinking or smoking, most dwarves have the same biology as any other person, just in a smaller package. Most people with dwarfism can have active, healthy lives and normal life spans.
Another myth I’d also like to bust is that because we’re smaller, we can’t handle alcohol as well as larger people. There are many factors that come into play when it comes to alcohol tolerance such as genes, drinking history, gender and so forth. But many forms of dwarfism are just people with a normal torso with short limbs, hence they would have large organs for their size, giving them MORE tolerance than a child of the same size.
Also, I think it’s common sense that if I’m in my 20s, and I’ve been smoking for a couple of years, that you’d think I’d have already talked to my doctor about it.
5. That we can’t have sex
Left this for last because I think this is the most asked question I get by Malaysians. People don’t realise this but many Malaysians are really afraid to talk about sex. I’ve met many that talk about sex as if they’re so pro at it but… *sigh*…many do not even know what STDs are. So when it comes to dwarves having sex, it doesn’t seem real. Yes, dwarves do have sex. Yes, we have normal genitals. And from every single female dwarf out there, yes, we can take it.
It’s difficult for some and not many Malaysians are open-minded enough to even go on a date with us (My experience part 1 & 2), but that doesn’t mean we don’t want it to happen. You don’t just assume that a virgin has no sexual needs, do you? Some people even ask me how dwarves have sex as if it’s beyond impossible. Of course, me being me, I go on a full rant about blood rituals and invoking Satan’s name in loud moans.
But you can ask us, sincerely, about how sex works for us or how it might be different, however I think it’s rude to assume we don’t have sex or have sexual needs AT ALL.
It’s ok to ask, really 🙂
This is what dwarves face almost every day. This is what happens when you tell your kids to shut up when their questions are more valid and less ridiculous than the ones grown-ups ask us. I never had an issue with people asking about my disability, I just have an issue with tactless and ridiculous questions that anyone who has basic common sense wouldn’t ask.
Also, never ever tell a disabled person they’re not actually disabled or that you sometimes don’t even notice they’re disabled. Do not be blind to our disabilities. Acknowledge, understand and empathise.
Here are three more bonus facts:
- Not all dwarves are the same. There are over 200 types of dwarfism, and two main types of dwarfism; proportionate (where their body parts are in proportion but shortened) and disproportionate (where they have average-size torso and shorter arms and legs or a shortened trunk with longer limbs).
- Not all dwarves have family members who are dwarves. There were no dwarves in my family ancestry, so mine was entirely a random genetic mutation. And no, my siblings are all ‘normal’. My older brother is about 6ft and I occasionally tease that he took all my height and there were none left when I was born.
- Are there treatments? You can’t ‘cure’ dwarfism, but you can do a bunch of things to make things more comfortable. Whilst I went for bone-corrective and limb-lengthening surgeries since I was 7, others take medications, and some are so healthy, they don’t need any medical help. However, scientists are working on a ‘cure’ though.
Just because we look different doesn’t mean we’re of a different species. It’s not Lord of the Rings. We’re more like Tyrion Lannister (Game of Thrones); sarcastic, an alcoholic, and really good in bed… I’m kidding… maybe.
BONUS: “What do we call you guys?”
Human beings, or just use my name. But if you wish to be scientific about it then ‘dwarves’. Personally, as long as no offence is intended, no offence will be taken. 😉