But they didn’t see that today she needed an hour to get out of bed. She already gets up hours before she needs to leave. Washing her hair was a struggle but she couldn’t skip another day. She skipped breakfast because she just did not have the energy to make anything. The days are so hot now, when she finally got out the door, she had to walk slowly so as not to overexert her body. The bus was crowded and she was too shy to ask for a seat. Standing drained more of her precious resources. She got to her work and was already so fatigued.

This is an episode, they last for a couple of days, sometimes longer, and then they pass again. Once they do, she can do more work and focus better.

She feels so ashamed when people start to notice her later arrivals or lack of initiative for new things. She has many ideas but no way to implement them. She loves her job, she wanted it so much! She gets the work done on time but never goes for drinks or after-work events. Some flexibility at work would be a game-changer. It would help her to deal with ever-present, crushing shame that she is somehow failing even while doing every single task she’'s supposed to. She’s just so fatigued from the world that does not work for her.

Some days like this one she would benefit from a remote work day. She could conserve the energy and spend it on new projects or getting more things done, but it is another label of “lazy” because everyone knows people might also feed their cat and wash a dish if they work from home. Unspeakable! Anything that would help her do her work more efficiently is considered a “luxury” or an extra but wouldn’t really require anything from anyone. They built these offices where they can watch you and scold you if anything is out of norm - who will use them if people work remotely? Who will fill the streets and buy the boxed salads at the only corner cafe available to lunchgoers?Sometimes it can go as far as “it is unfair to others.” Imagine saying that installing a ramp or handles in the bathroom is unfair to others.

But why is this fair to her?

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I’ve been researching how to teach my still-young dog to stay calm when we’re out, just sitting in the park or at a restaurant, because she can be a little ball of mercury - shifty and always moving. The research led me to something I hadn’t considered: calm has to be taught. For dogs, it’s a learned skill. So this morning, instead of our usual walk, I sat on a bench and rewarded her in the moments of calm, not the tense looking around, the demand barking, or the attempts to stare me down for treats.

That got me thinking about how we humans are expected to be productive every minute of every waking hour, maybe even in our sleep.

You are valued based on your output, yet rarely recognized for resting in order to maintain the vessel that produces that output. When rest is vilified and time itself has become a commodity, we’re no better than machines that can never stand idle because idleness is lost profit.

You cannot watch a movie without folding laundry. You cannot sit on a bench and just listen to the wind. You cannot read a book unless it comes with a promise of increasing your value somehow. It is our own version of the never-ending chase for treats, tensely looking around and never settling down.

And you know who gets hurt by this notion [well, everyone, actually, but that’s a different story]? It is the disabled and chronically ill community. We need more downtime to survive and keep going. Whether it’s a day spent in bed, canceling plans after work, not listening to that podcast on the way to work, playing a game, reading for fun, eating leftover pasta for breakfast because we do not feel like cooking - we’re told that there is less value in resting because it is treated as a weakness rather than a necessary part of being human. According to this mindset, we lose precious time and money by resting, yet we never hear about how much more we lose when we don’t rest enough. Or when we never stop and listen to the world around us.

But are we actually failing, or are we preserving something that’s going extinct, even if the rest and the stopping are sometimes forced on us by our circumstances? What is this general, systemic inability to stop, stand still, take a breath, unless there’s some tangible gain in it? Is it fear of sitting with your own thoughts - are we truly scared, or just forgetting how? Are we conditioned to avoid a substantive, deep inner monologue? Are we encouraged to avoid thinking - REALLY thinking - about the world beyond the small circle we move through each day? We are obsessed with “maxing” our outer lives but never our souls, because everything visible to others is expected to fit neatly into a box and a time slot on a specific day. And if it doesn’t, we feel guilty.

Today on that bench I was teaching my pup, and myself, that stillness is safe. That it is desired and rewarding, even when the world demands we always be available, restless, in search of the next thing to chase.

You could say that maybe I am simply not that great to talk to, but the evidence shows that this is not the case (and if it is the case, then it is for a completely different reason). I think it is safe to say that it is related to my extraordinary height and to the unacceptable idea of a woman being [much] taller than a man. I also know that many men get body-shamed relentlessly when it comes to height and it is never acceptable. But it is not my fault, and projecting insecurities onto other people is not dealing with the issue.

Other part of this is that these men feel no attraction to me and therefore in their mind I do not deserve their attention. There are men who will be kind only to women they fancy and will mistreat women they are not attracted to. You know that popular thing circulating on social media telling you to observe how your date treats waitstaff at a restaurant? If he treats you well but is unkind to the staff, it is a red flag. I think I’m like waitstaff in this story - mistreated because value only gets attached to the people who are the direct object of their attraction, and my existence, in a body that makes people like that uncomfortable, is an inconvenience. I have established this to be one of the reasons just based on how often it is men, not women, who behave this way.

Sad part is that I used to tell myself that people simply needed time to get used to being around me. Then I stopped and thought - what am I even saying? They need to get used to being around me to treat me as a human being?! That is a pile of nonsense because I have never looked at someone - anyone - and felt that I needed time to get used to them before treating them with kindness and decency.

This is the mental gymnastics I have done my whole life to squeeze myself into the tiny space the world has assigned to me. That won’t work anymore.

I am on my way to unlearn all that and I hope you can come with me. I wrote this today because it happened again and I caught myself thinking the same thing: “oh, they just need time”. The only thing I should be telling myself is not to take any of it and to call it out to their face.

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This post might not be the happiest post I’ve ever made but it’s as real as it gets. 

When you’re chronically ill, you tend to ponder future more and from different angles. With a progressive disability you know that things will probably only get harder, but you hope that it’s not going to happen tomorrow or in a week - that it’s years away. But life hits unexpectedly. Everything indeed goes in a circular motion and you might get stopped in your tracks at any moment. 

Second half of 2023 was demanding and I thought I would power through it with no issue at all. I wanted to prove it to myself and others. Isn’t that how it usually goes anyway? In the Summer I underwent a complex surgery, soon after that we packed and moved continents, I started a new position at work and we bought our own place. I guess I thought that I could keep going at this speed and intensity as long as needed while having a nagging feeling that something will boil over.

I started getting strange symptoms in early January 2024. The strangest one was random whole body chills that only grew in power and frequency over time, and almost felt like seizures. At first I thought they were related to overexertion because they often came after exercising, but then they started appearing randomly. Every single day. At night I was sweating so much that my sheets were totally soaked, but in the middle of January after exercising, I started getting very strong upper thigh pain. I thought I pulled a muscle and the doctor suspected that I might have torn it. The pain didn’t subside at all even after 1.5 weeks and my chills were getting more frequent. Somewhere in the back of my mind I remembered a doctor mentioning an endocarditis prevention after my heart surgery in 2022 but the topic was never properly explained to me. I didn’t know the precise symptoms, but I did a short google search then and many of my symptoms checked out, especially the chills and sweating. I knew it’s time to go to the hospital. 

They admitted me to the hospital and ran all the tests confirming endocarditis. One of my worst fears came true. I will never forget the exhale an echo technician made while looking at the screen. I knew it was over. Bacteria was all over my mitral valve. Only two years after my initial open heart surgery and mitral valve replacement, they said they will have to reoperate and it’s going to be very complex.

I was absolutely devastated because my reality didn’t correspond to the expectations I had for myself and my health at this point. I thought I was finally safe. I hoped the worst thing had already happened to me. But that’s not how life works. On top of that, the leg pain that I thought was a separate incident, turned out to be another endocarditis symptom - a clump of bacteria had traveled to my artery in my thigh. I am so thankful it didn’t travel anywhere else.

I spent almost seven weeks in the hospital on the strongest IV antibiotics. At the end, my veins were so damaged that I couldn’t withstand an IV needle longer than couple of hours. My arms looked like a mine field. To this day, I still cannot use my left arm to draw blood.

Valve replacement was successful, but I am still facing some post-op complications. I got the flu while I was in the ICU from a nurse who was visibly sick and didn’t wear her mask. She also was dismissive of the level of pain I was in, telling me that no one else has this much pain. I didn’t ask for anything. I was already on the strongest painkillers. I just asked that she be careful moving me. I will never forget how I had to advocate for myself in that ICU only 3 (!) days after an open heart surgery. I had lung complications. And two months later I needed a cryoablation for AFib, after which a doctor told me I must have killed kittens or something in a previous life to be this sick now.

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I was isolated from my family most of that time in the hospital and honestly, this has been the most challenging time in my life so far. 

I wish I knew more about endocarditis before and how to prevent it because I feel that it was somehow my own fault. Rationally, I understand I shouldn’t feel that way. In the hospital, they checked everything they could think of to determine the possible cause, but to no avail. They also couldn’t determine what bacteria caused this and that only adds to my anxiety because I don’t know what I did wrong. I will never know.

Despite the physical toll, the effect this had on my mental health has been so destructive. How do I not let the fear win? How do I regain some normalcy? How do I prevent this from happening again?

Right now I’m working on my recovery. It’s slow and I’m impatient, but I know I can't skip any of the steps. Every night I stay up late until I can’t keep my eyes open anymore because I’m scared to go to sleep. I break down a lot, but I’m lucky that I have my loved ones to build me back up.

While in the hospital, I often told my illness “you have no power over me”, quoting Sarah’s words from the movie “Labyrinth”, and I still remind myself of that daily. I just need to find my voice and my standing again. Spring is a good time for that.

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This comes down to so many people viewing disability as one-dimensional. For them, disability is misery. It is loneliness.

Disability is to be spoken about in hushed tones and othered so far that any normalcy in a disabled person's life is seen as vulgar. Anything that a disabled person does is seen as less meaningful. It doesn’t fully count because, dare I say, disabled people aren’t seen as fully human.

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Online friendships are seen as silly and unserious because you can’t go out all the time or invite them over - what kind of friendship is that? Despite the fact that I see my “in-person friends” very rarely, and the rest of the time we still mostly talk online. So how exactly are my online friendships that different, or that unserious? They are the result of my online presence, which is something a lot of these naysayers cannot relate to, so how would they even know?

I have made some of the most meaningful connections of my life, including with other disabled people, online. The first people with Marfan syndrome I ever met besides my dad were online. Up until then I had never met a person my age with the same rare condition. Now I have an amazing group of people across the globe who understand exactly what I’m talking about, have taught me to advocate better, and that vulnerability is not a weakness. They supported me through some of the most difficult times of my life; they supported my family too.

Don’t be the person who gatekeeps friendships or any other normalcy a disabled person has. The friend you see once or twice a year is also pretty much an online friend. Still counts, no?

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I am not special just because I live in a very different body from others. I think it is the most relatable thing about me. Because of this body, I have also had to wear my heart on my sleeve – even during the moments when I have wanted to hide away forever. I had to be visible even when I did not want to be. I am one of the tallest women in the world, if the information and my own experience serves me right. I have a disability. I have a rare condition. All of that has changed the rules of the game quite early on.

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I also have ambitions, dreams, hopes, everyday errands. I go to work, go shopping, sit on my couch and watch TV with my family. I am a participant in our society. I am a friend, a wife, an animal lover. I am so many things.

And I do all of this while carrying a fear of repeating the fate of my father, who died from an undiagnosed genetic condition that I am trying to co-exist with. I have gone through unspeakable amounts of medical trauma and pain. I am unlearning chronic people-pleasing and overcompensating, because I always thought I was a burden and too much for everyone around me, so I tried to make it easier for them. I tried to shrink myself: bending my knees, crushing my own spirit, making myself less of everything. All of that to fit in.

But it never worked. Because I was trying to squeeze into a space that was never built for me.

My story is actually quite ordinary. It is relatable to everyone who has tried to fit in but couldn’t, because the world hasn’t seen them yet. I have experienced being overlooked because I do not look feminine or pretty enough. I have been ignored or singled out. I have been called terrible names behind my back and in my face. I have been harassed and objectified because of my height. I fear the sound of strangers laughing. I often do not find myself in event photos because I ruin the “aesthetic”. And I have met so many women who too have been treated like this.

It is a powerful connection.

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I have come out not wanting to dwell on pain and negative experiences, but they have been powerful teachers.

The answer was always to create my own space and invite others into it. By opening up to the world, I am opening a door and inviting you to connect, share, and learn from each other.

You fit here.

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That begs the question - have we already missed the train on including historically underrepresented and excluded groups in conversations about how AI is developed and who gets to participate? This feels like - fleetingly so - exactly the right moment to address and correct the deep-rooted biases still defining the outputs of AI systems and AI-generated content.

If machines really are more objective than we are, why are we not using that as an opportunity to finally correct the record: on disability, on women’s health, on every group we have historically gotten wrong?

As a woman with a disability and someone closely following the debates about inclusive and accessible AI, I have a well-founded concern that without the international community and tech companies stepping up, the biases and gaps will keep widening. While tech companies have made plenty of attractive on-paper commitments and policies, and accessibility and inclusion are becoming less of a stand-alone category and more of an integral part of tech development, the reality is that we are living through a moment where DEI is being dismantled and hard-won human rights protections are being reversed. In the current climate, “inclusion” is enough to make people click away.

Hence, this is exactly the time to act boldly and stop making lukewarm statements or taking safe steps. I initially wanted to say that the conditions are far from ideal but you know what? I think it is the opposite. The conditions are exactly right to act with purpose as catching up will become more difficult, and eventually impossible. And the sentiment of “leave no one behind” will remain just that - a catchy phrase occasionally dusted off in multilateral settings and left there.

The primary responsibility for monitoring, correcting, and preventing harm belongs to developers and governments - not to the communities already suffering the damage. Underrepresented groups should be at the table as experts and contributors, helping to shape these systems from the start. They should not be left with the consequences of decisions they had no part in making.

Instead, the same tired arguments keep coming back. The conversations about AI inclusion and accessibility sound familiar - because they are. Now too, the same misconceptions surface that we have heard every time people with disabilities and women have asked for inclusion and accessibility: it is expensive [no, it is not - when it is not treated as an afterthought]; there aren’t enough people from this community using the technology [yes, there are, but you did not do your part to find that out]; we will deal with it later [getting things fixed later is always more expensive - or it gets forgotten altogether].

The deeper misconception is that technology is inherently neutral and objective, and therefore requires no special policies to promote inclusion. This is a myth, and a consequential one. It perpetuates outcomes ranging from straightforward exclusion all the way to more serious human rights violations against people with disabilities and women. AI systems are fed information and perceptions that already exist in the world which means it inherits every bias embedded in this data. This shapes both how AI sees certain groups of people, and whether it sees them at all.

What’s particularly hard to ignore is the timing.

We are building these systems from within the problem. Biases against people with disabilities, women and other underrepresented groups predate AI.

We have not yet addressed them properly outside AI, and we are now risking spreading them to a much higher degree. For instance, AI’s most enthusiastic adopters such as healthcare, financial services, law enforcement etc. are fields with well-documented histories of biases against people with disabilities and women.

Automating decisions about who is fit for a job, who gets approved as a tenant, who receives what medical care - this sounds like progress. It probably is, if you are the person the world was built around and built for. But if you are someone like me or someone from any other underrepresented group, it is a different proposition entirely. It means you’re likely being excluded before you reach a human being because of a system trained on data that never included you or got you completely wrong.

I don’t want to go to a doctor and be treated as a textbook patient. I have never been textbook, and treating me as one would do more harm than good. I have a rare condition, and I am also not a male - the body that medical science has historically treated as the default, and the standard everything else is measured against. That puts me in a category that cannot be automated. And I am far from alone. A staggering number of people will receive worse healthcare outcomes because of two compounding realities: conditions that are rare and chronically understudied, and women’s health that is so misunderstood, so underfunded, and so riddled with research gaps that unbiased AI results at this point are unlikely. Women’s health and behavioral data is systematically underrepresented in AI training datasets. And it worsens at the intersections - for disabled women, women of color, elderly women etc.

So, what do you do? Besides putting enormous effort into what data AI systems are exposed to, first, put everyone at the table - from the beginning. If you missed that window, don’t wait for the next project but act now. Audit what is not working and fix what can be fixed. Test with people from genuinely diverse backgrounds but don’t do it as an afterthought or a trend, but as a rule of how you operate. We already see more of this. The 2026 Forbes Accessibility 200 has some great companies on the list. That means that you don’t need to reinvent the wheel. Take what already works and perfect it.

Be purposeful about this. Go out of your way, seek out people who have been systematically left out - not as an exercise or a performance, but because they will make your product better. Yes, better, because nobody has ever complained that something was too accessible, or that including disabled people made the outcome worse.

Furthermore, you make sure your algorithms are not working against underrepresented communities but have a positive impact on them.

Second, every field and industry benefiting from AI has both a moral obligation and a clear business case to invest in understanding the biases built into these systems, and to follow up with concrete steps to level the playing field.

When you think “people with disabilities,” a very one-dimensional, stereotypical picture probably comes to mind. But they are also innovators, consumers, professionals, experts - a seriously untapped market that most developers and companies have not yet woken up to.1

Ethical arguments aside, leaving these people out frankly is not a very wise strategy. If altruistic sentiment doesn’t move you, the numbers should.

While AI has massive potential for accelerating inclusion and accessibility, there is a real chance we will miss that opportunity entirely and create new barriers instead. The “move fast and fix it later” approach is not worth it and it doesn’t actually work. What you get is reputational damage and the inevitable scramble to fix your oversight but what you could have had is a good product people actually want to use in the first place.

I strongly believe that a society’s progress is reflected in how well it applies the potential of everyone in it and how well it takes care of all its members - not just those it was already built for. The most advanced societies in the world are proof of that. We have an opportunity to take a step further and prove the same with AI. We also have a very clear way to squander it.

The question is not whether we should act. It is whether we can afford not to. If we truly want to do something that changes the course of what we can possibly achieve, this could be it, but not if we keep chasing fast gains at the expense of finally getting it right.

Inequality does not live only in reports and rankings. It lives in daily professional life, in the quiet expectations placed on women long before anyone openly questions their competence and place.

The thing nobody tells women when they step into professional life: there is an unspoken contract. You may rise the ranks. You may have the title. You will certainly have the competence, trust me. But there are strict, unwritten rules hanging in the air around you that even the most equitable of places still push you to embrace. Be agreeable. Don’t make it uncomfortable. Be grateful for the seat at the table - even when they ask you, not your equally ranked male colleague, to fetch the coffee.

What’s the big deal? He stays at the table. He gets to talk. He will probably be promoted over you. Coffee ask is not innocent, it is a status assignment.

You will tell me that all of this has been said and heard before. Yes. And yet it is still happening in the rooms and institutions that label themselves equitable and accessible. It’s even easier to miss when these places hide behind statistics. “Everything is fine here, look at the numbers, we have so many women in leadership roles”. It almost makes you feel inadequate because sometimes numbers do not align with your lived experience.

It is because numbers alone do not tell the whole story. For example, you might have data comparing the performance of two colleagues - a man and a woman - of the same rank and conclude, “he delivers measurable results; he’s the stronger performer.” But that comparison is already biased, because it counts only what’s visible, and so much of women’s work remains invisible and overlooked, including fetching the coffee, taking notes and coordinating the room. In addition, nearly half of the work done by women goes unpaid.

And when women are promoted, what kind of leadership are we talking about? Across organisations, women’s promotion rates drop as seniority rises. Women may enter lower and middle management, but they remain underrepresented at senior leadership levels, indicating a “leaky pipeline”. In public institutions, gender gaps often show up in grade-by-grade differences, promotion probabilities, and senior leadership bottlenecks. In 2024, it was established that in faculty promotion at the University of Geneva women are 11 percent less likely to get promoted. “Although women constitute 47 percent of PhD graduates in Europe, their representation diminishes significantly as they climb the academic ladder, with only 21 percent serving as full professors.”

Numbers also conceal another reality: even when women do reach leadership roles, they are still more likely than men to have their judgment questioned and their expertise and authority undermined.

The ladder was built for one kind of woman, and if you don’t fit that shape - if you’re too loud, too principled, too disabled, too unwilling to pretend - you are unlikely to be allowed to climb it, or you will climb it much slower. Also, do not confuse exceptions with the rule. And sometimes the woman who made it, will pull the ladder up behind her just to protect her place and survive. And no, it is not an “aha moment” that proves that women do not support women. More often it is proof that systems shape behaviour, and that people learn to survive inside structures that reward absolute compliance and self-erasure.

Add disability, and the gap gets wider. People with disabilities face greater barriers to reaching senior roles. Women with disabilities are less likely to hold managerial positions than women without disabilities, and while men with disabilities also face disadvantages in progressing to the top, they are still more likely to reach senior roles than women with disabilities.

Disabled women do not lack competence or drive. Dare I say, disabled professionals are as ambitious as anyone else, but because the room is built to doubt them, they have to fight harder to convince everyone that they belong here.

Disabled women are expected to be grateful for access that should have been a norm in the first place, and to accept barriers as normal. They are told to earn their place in the world that was not designed with them in mind.

Disabled women are often judged, patronized, and pushed aside because of discriminatory assumptions and the way their access needs are perceived. Many carry the constant burden of having to repeatedly advocate for their rights, while also facing heightened risks of harassment, bullying, and other forms of harm at work.

Even as policymaking increasingly acknowledges the barriers women and disabled people face at work, the distinct realities of disabled women - shaped by the intersection of gender and disability - remain largely unseen and unaddressed. It is also clear that persons with disabilities are still not taken seriously into account when important decisions are made.

First, their needs are too often treated as an afterthought - something to fix once the process is already underway - creating more disruption than if accessibility and inclusion had been built in from the start. Second, often they are not at the table when decisions are made about them, so good intentions do not translate into good outcomes.

So what should we do with that on International Women’s Day, and on every other day of the year?

Not just post. Not just celebrate. Not just point to numbers. Everything I have described above reflects conditions in privileged countries. In countless other places, women are still denied even the most basic rights. That is exactly why it is not enough to add another performative post to the pile. Make your voice count. And do not stop on 8 March.

Ask the hard questions. Question the numbers so often pushed in front of you as a blanket meant to soften your discomfort and dismiss your lived experience. Who gets heard in meetings, and who gets quietly assigned to serve the room instead of shaping it? Who gets promoted, and on what terms? Are the terms equally applied? Whose work is counted, and whose work is absorbed into the background? Who is included from the start, and who is expected to ask, justify, and wait for the bare minimum?

We should stop treating accessibility, inclusion, and equity as last-minute fixes or personal favors. They are not acts of generosity. It is not a luxury or a bonus. They are standards. And they should be designed into workplaces, leadership structures, and decision-making from the beginning.

We should also be honest that representation alone is not transformation.

A woman in the room is not the same as equality. A disabled woman in the room is not the same as inclusion.

The real question is whether they have authority, support, dignity, and the freedom to exist and use their voice equally without shrinking themselves to fit.

And perhaps most importantly, we should build workplaces where women, including disabled women, are not rewarded for silence, self-erasure, and endless adaptability, but for their ideas, leadership, diligence and humanity.

Every. Day.

To me, it is not rare to feel diametrically different every single day. It’s like you’re a ragdoll that someone threw in the air and you don’t know if you’ll hit soft grass one day, and rocks the other - or maybe get stuck somewhere on a tree branch. It’s like right above the textbook issues of Marfan syndrome - enlarged aorta, weak connective tissue, eye problems and everything else - they should put “unpredictability.”

But hey, living with Marfan syndrome or disability altogether isn’t a journey or a battle. It’s just... my life. It’s googling whether a new ache or sensation is normal or maybe heart-related at 11pm. It’s being the tallest person in the room (maybe in the whole country in my case!) and also the one who needs to sit down first. It’s a weird mix of “you don’t look sick” and “wait, your heart does WHAT?”

But while I feel this lack of control and unpredictability, I have found something even rarer - and it was probably the point all along - my community. Friends. Not just one friend, I have found many of them. We speak the same language - not English or Latvian. We speak the language of mutual understanding.

Can I even complain that I have this weird thing going on? Yes, I can. But both things can be true at the same time - you can be grieving the version of yourself you thought you’d be but never will, while being content, doing your best, and maybe even thriving in this crazy world.

If you know someone with a rare disease - just check in on them sometimes. Not because they’re fragile. Just because it gets lonely being the person who has to explain their own body every single day.

Cheers and stay kind! 🤍

Ance