The Imperfect Hero?
Disability activist LifeOnWheelz under fire after pseudo journalist tries to shame them publicly
If you’re a person with a physical disability, especially if you're wheelchair-bound, Poland is not a good place to live in. In Poland, people with disabilities face significant challenges, including limited financial support and inadequate access to essential services (please read this footnote1; it matters). In Poland, a person with disabilities is still often referred to as “chory,” meaning “sick,” and worse.
A couple of years ago, Polish couple Wojtek and Agata Sawicki became viral after publishing a photo in the style of John Lennon and Yoko Ono, and after they talked to Vogue (and published more scandalous photos) about not just being a couple but a couple who was intimate and who was even engaged to marry, and who planned to have children.
Wojtek, known for his "Life on Wheelz" platform, has been living with Duchenne Muscular Dystrophy (DMD) since early childhood. DMD is a rare and incurable genetic disorder characterized by progressive muscle degeneration and weakness. It primarily affects boys and leads to a complete loss of body control over time. People with DMD often require the use of ventilators and may need to be enterally fed as the disease progresses. Wojtek, who has an incredible but very dark sense of humour, pokes fun at these mobility challenges, for instance when he refers to the two still-mobile but bent fingers of his left hand as “shrimp.” In other words, he lives by the same adage many people who have seen & lived real dark stuff live by, which I personally refer to as “It’s so fucking sad it’s funny.”
His sense of humour is not the only thing many perfectly able people could relate to – he gets angry, he is sarcastic, he talks about sex, he talks about art, he talks about fucking up, he talks about needing money, and most recently, he and Agata have gone through a pretty public split and divorce.
Then there’s Agata. A cool, beautiful and talented musician, with Angelina Jolie-like features, who fell in love with Wojtek and who lived with him for six years. It didn’t work out. Both Wojtek and Agata started their own profiles but continue to run Life on Wheelz as a place where they educate people about disabilities (it is also a registered foundation), and where they used to post content about the challenges of living as a couple where one partner requires 24/7 care. Their expenses, as you can imagine are enormous. (For reference – combining direct medical expenses with in-home care costs, the total MONTHLY expenditure for supporting a person with DMD requiring round-the-clock care in Canada could range from approximately $11,735 to $21,735 — based on factors such as the individual's specific health needs, regional variations in care costs, and the availability of public assistance programs. In Poland, an good monthly salary is less than $3,000 CAD).
Despite getting some financial assistance from places like Osoby z Niepełnosprawnościami, OzN, sometimes they ask for money, always being transparent about the costs of Wojtek’s care, and not hiding the fact that they want to live just like you and I and once in a while buy a pair of designer sneakers or travel out of the country. Charming and funny and often raw about their struggles, Life On Wheelz amassed lots of followers and, of course, with that lots of haters who often left comments doubting Agata’s feelings or suggesting Wojtek was a vegetable and his quality of life sucked. (Since I’ve became a fan of the account I’ve seen Wojtek not only swim in the sea for the first time since losing all feeling and mobility but also fly a paraglider. I don’t know about you but I haven’t flown a paraglider and unlike Wojtek I could easily strap myself into those two terrifying wings.)
On the positive side, the account has single-handedly put people with disabilities in the spotlight – thanks to Life On Wheelz, for the first time, thousands of Poles saw stairs not as a symbol of progress, but as a barrier—an obstacle that excludes rather than enables. From where I’m sitting – and I’m pretty plugged into stuff – Life On Wheelz facilitated and still facilitates a moment of collective realization that people with disabilities are not invisible; they are among us, navigating a world not designed with them in mind.
But, of course, the higher you rise, the harder they try to pull you down. A couple of days ago, some gossipy YouTuber pseudojournalist, “Klepsydra,” published an “expose” about Agata and Wojtek and Life On Wheelz. You don’t speak Polish but if you want to know it’s all very Perez Hilton circa 2001. Bitchy, dumb stuff and using comments of trolls as “facts” and drawing all kinds of idiotic assumptions, exactly in the same style of the old Perez Hilton. This form of tabloid “journalism” is still very popular in Poland. Very pearl-clutch-y and masking outrage as concern. In the expose, four former assistants spoke up about the couple, revealing that Agata has a temper, that she has asked assistants to do laundry or relieve her when she wanted to go out for a coffee by herself! Agata has also yelled at Wojtek. Swore at him! And when she left after their separation she went on a trip to the mountains. And Wojtek? He’s no better. Wojtek bought himself a couple of pairs of expensive shoes. Not only that, he refuses to help everyone who writes to him, he often talks about himself and only his disabilities and his problems (this isn’t true, I’ve seen the account publicize and repost others’ causes often). Can you believe that? Not only that, Wojtek, at one point talked about building a dream home that would feature state-of-the-art architecture designed to help a person like him live comfortably. It didn’t work out due to the pandemic and the war in Ukraine, and now, I’m sure it’s never going to happen because since the expose the hate is just piling on with thousands of outraged trolls accusing Wojtek and Agata of… what exactly I don’t know, daring to be like everyone else? Showing this via the account that was founded to prove exactly that, that people with disabilities ARE like everyone else? Off with their heads!
In 2014, caregivers of children with disabilities staged a sit-in protest inside the Polish parliament, demanding increased financial assistance. Their primary goal was to raise the caregiver's allowance to match the minimum wage. This protest resulted in a gradual increase in the allowance for caregivers of minors with disabilities. However, caregivers of adults with disabilities, who protested outside the parliament, did not see their demands met.
A subsequent protest occurred in 2018, where people with disabilities and their caregivers occupied the parliament for 38 days. They advocated for a monthly rehabilitation allowance of 500 PLN for adults with severe disabilities and an increase in the social allowance to align with the lowest full incapacity pension. The government agreed to raise the social allowance but did not meet the demand for the rehabilitation allowance. This protest significantly heightened public awareness of the struggles faced by people with disabilities in Poland.
As of 2023, organizations representing people with disabilities in Poland have renewed their protests, calling for increased financial support and improved care from the state. Advocates are also urging Polish authorities to adopt legislation that guarantees access to personal assistance, emphasizing the need for greater independence and inclusion for people with disabilities.