The word “disabled” makes some people uncomfortable. It’s sounds defeatist, pessimistic, and maybe even offensive. (It’s not.)
Some of my friends and loved ones cringe when I call myself disabled. They think it’s tacky, attention-grabbing, or even just inappropriate. But the fact of the matter is that I fit the definition of “disabled”: “(of a person) having a physical or mental condition that limits their movements, senses, or activities.”
I can’t walk for more than five minutes, my diet is super restricted, and if I ever get a cut or shoe blister, it 100% will get infected if I don’t dress and cover it straight away. So I feel like it’s a fair description of where I’m at.
Anyways, other friends and loved ones think, “fine, you can call yourself disabled, but you don’t need to go on about it.” I get that. No one likes someone who makes one adjective their whole identity like a bitcoin bro or Evangelical bible-thumper, but I’m not trying to make my whole personality revolve around being sick. It just so happens that I will be sick all the time.
I actually put the word “disabled” in my bios and talk about disability quite openly because doing so does the following:
1. It challenges people’s ideas of what disabled people look like
When most people think of disabled people, they think of geriatrics, amputees, or neurodivergent individuals. Invisible disabilities are often not recognised (and are sometimes even dismissed) as disabilities, even though they can be just as debilitating as visible disabilities. By looking relatively able-bodied (at least sans mobility aides), I can pass as an able-bodied person. However, by telling people I’m disabled, I’m adding another data point to their idea of what disability looks like. The more diverse the disabled community looks to people, the easier it is for disabled people to be accommodated, understood, and supported.
It’s also important to remember that anyone can become disabled at any point in their lives. Because I had acquired a very narrow and negative view of disability as a young person, when I got sick at 16, I refused to identify as disabled because it seemed shameful and not representative of my experience. By straight out just existing as a disabled person within any social group, I’m inadvertently showing people that disability isn’t something to hide away. It’s not shameful and I can still lead a content, fulfilling, rather pleasant life.
2. It makes it easier to ask for accommodations
My second job out of university involved working with a tight-knit team of crisis comms specialists. Everyone worked hard and late, and taking a step back was out of the question, not because someone was cracking a whip but because there was this energetic momentum that inspired and drove you onwards.
I joined the firm in January and was told that in June, we’d do a 5k run to raise money for charity. I had already left my previous job and moved to London because I was so sick and needed to be near a specialist liver centre. I was so weak that climbing stairs to my 5th floor flat would make me faint and my 7-minute walk from the tube to my office in the mornings winded me so much that I’d catch my breath, head between my legs, for 15 minutes in the office bike room before riding the lift up to my desk. I had no clue how I was going to run a 5k by June and even less of a clue how I was going to get out of running a 5k.
My colleagues knew I had celiac disease but that was just a diet thing. Every now and then I’d go to a doctor’s appointment, but I was so scared of not pulling my weight that I would postpone and postpone appointments and tests to stay at work. “Fortunately”, I never needed to get out of the 5k run because by April, I was admitted to hospital where I stayed for a month, eventually resigned, and returned home to Hong Kong to recover.
Ironically, by hiding my disability from my job, I ended up making myself even sicker. No amount of keeping my head down and lips sealed made my disability go away. If I had been upfront about being disabled, I could have asked to sit out on the race and contribute some other way. But I was scared that revealing it would at worst stop people from giving me opportunities or at best lead to gossip that I was lazy. I was also scared to disclose it when I interviewed for the job because I worried they wouldn’t hire a sick girl. (Legally, you don’t need to tell an employer if you’re disabled.) All this compounded into inevitably hurting myself and inconveniencing my colleagues, who suddenly had to fill my position on a random Monday morning when I went to the ER and never came back.
The weirdest part of this whole saga is that my firm would almost certainly have been fine with me disclosing my disability and asking for accommodations. We had a bunch of birthdays in March and for every single one, I had my own special celiac-safe gluten-free cake slice to eat. They were accommodative and considerate, and I don’t think that they would have gossiped or taken opportunities away from me if they knew how much I was struggling with my health. And yet, I was too ashamed to tell anyone.
To combat the shame that inevitably takes over, I try to wear my disabled identity on my sleeve. If I’m up front with people about my disability, I feel more confident drawing boundaries and saying “no” to things I just can’t do. That being said, there are certain places I deliberately don’t take my cane because I’m too ashamed still. I’ll write about that later.
3. It saves me sooo much time
Piggybacking off the last anecdote, I must add that by just coming out and saying “hey world, I’m disabled,” I’ve saved so much time that would have been wasted having the same conversation explaining that I can’t do things because I have this disease and that illness. I remember when I published my first blog post of the 10-year anniversary of my autoimmune hepatitis diagnosis, I felt so much relief because it felt like a massive “coming out” announcement.
Prior to being so open about my disabilities, I had had to explain to people who I was reconnecting with in Hong Kong that I wasn’t the same person they remember from the 2000s. Now I was ill and could barely walk and needed to live with my parents in my late twenties. Having that conversation again and again is exhausting, upsetting, and uncomfortable for everyone. it’s so much easier to throw out there on social media that you're disabled and assume people have read it. Of course, not everyone will have, but the act of saying it out loud and in public for me made me feel a lot less of a burden being the only communicator for my disability.
Of course, some people still ask me what’s wrong. I even had one friend say, “Oh my god, lol, why do you have a cane?” but the experience of just telling the world online that I’m disabled gave me the confidence to reply, “I’m disabled.” They didn’t question it after that.
4. It stops me from lying
I worked at my college newspaper, the Columbia Spectator, for most of my time at university. Close colleagues knew there was something wrong with me, but I was always a little vague and never really wanted to talk about it. However, that meant that when I got sick or relapsed, I didn’t know how to tell people that I couldn’t make meetings, or go to the office, or carry out my tasks.
I felt like if I suddenly said, two years into the job, “Oh, by the way I have hepatitis and therefore cannot come in”, it would feel like a lie. “Oh what? Sophia has hepatitis suddenly? How awfully convenient?”
Also, a lot of the time I was just exhausted. I know now it was chronic fatigue syndrome but being “exhausted” seemed like a terrible excuse given that everyone at Spec was exhausted.
The excuse I used to stay in bed was that I had food poisoning. I think I had “food poisoning” maybe 17 times in a semester. I would even eat from the hot dog and halal carts on Broadway because it made the food poisoning thing a little more believable.
I felt guilty and stressed out lying about food poisoning. Now, as a wiser 27-year-old who knows that the exhaustion I felt was actually myalgic encephalomyelitis and not just burn-out, I feel like all those lies and stress from lying could have been avoided if I just told people straight up about my hepatitis.
That being said, I still feel like most exhausted college kids would not have accepted “I’m tired” as a good excuse, disabled or not.
5. It builds friendships with acquaintances who also happen to be disabled
When I was a senior in college, I met a first-year at a birthday party. They were friendly, but given our age gap, our acquaintanceship never advanced beyond following each other on Instagram. Fast forward 4 years to me posting an Instagram story of me sneaking a bottle of gluten-free soy sauce out of my bag, pouring it into a dish at a Japanese restaurant, then stowing it away again. (I usually bring my own GF soy sauce with me because most restaurants don’t have their own.)
They messaged me saying that they did this too. Turns out we both were diagnosed with celiac disease after that birthday party where we met. If I had not shared that I have celiac disease, we would have never made that connection and subsequently compared notes on our favourite GF pastas. It’s a small boon, but this actually happens a lot and feel way less alone by it.
I want to acknowledge that coming to terms with my identity as a disabled person took years (i.e. 10!) and this is in no way me encouraging anyone to call themselves “disabled” if they are not comfortable with the word.
Disability is a uniquely lonely experience because diseases vary so greatly, even within the same diagnoses. You are under no obligation to disclose your disability to anyone if you don’t want to. This blog post is just me sharing how liberated I feel by disclosing my own.
Quite a few people ask me what my disabilities are. I have seven, four of which are autoimmune: autoimmune hepatitis, autoimmune cholangitis, ocular myasthenia gravis, celiac disease, ME/CFS, fibromyalgia, and osteoporosis.
You can learn more about me on my About page. If you’d like to follow along and read the upcoming blog posts I have planned, you can follow me at @sophiahotung Instagram or Facebook.