Protecting the Invisible: A Victory for Those with Unseen Disabilities
Disappointed and feeling powerless. That is the emotion swirling inside Raissa Fatikha (26) as she stands enduring pain among hundreds of LRT Jabodetabek passengers heading to Dukuh Atas Station in South Jakarta. Even though she has pinned on her disability badge and feels entitled to priority facilities, those around her are always misled by her still-appearing fit body.
“I still feel like I’m not disabled enough. Am I even entitled?” Raissa revealed when met by detikX.
In fact, Raissa has been diagnosed with two neurological disorders at once: Complex Regional Pain Syndrome (CRPS) and Thoracic Outlet Syndrome (TOS), which have afflicted her body over the past decade. This condition causes persistent pain from the shoulder to the hand, limiting her daily activities and stamina.
“It’s like the sting of a wound, but more specifically like a wound stung by water, and it can also feel like being pricked by sharp objects, throbbing, and burning. And when it’s flaring up (a sudden uncontrollable relapse), everything comes at once,” she explained.
She has even undergone surgery in Dubai, United Arab Emirates, in an effort to alleviate the pain. However, for now, she focuses on taking medication routinely. Nevertheless, the UI postgraduate student in Professional Education Psychology admits to feeling torn due to the side effects of the drugs, which make her easily fatigued.
“Between taking the medicine but feeling tired and drowsy, unable to do tasks, or not taking the medicine (and) staying alert but in pain,” she said.
Honestly, Raissa is tired of facing inner turmoil every day due to pressure from her surroundings who do not fully understand her condition. “Because the symptoms are very unpredictable, they can relapse out of nowhere. Even if we try to manage it, it’s still out of control,” she added.
On that basis, Raissa and her friend Deanda Dewindaru spent seven months in the Constitutional Court. They sued regarding the Explanation of Article 4 paragraph (1) letter a of Law No. 8 of 2016 on Persons with Disabilities, which does not include chronic diseases categorised as physical disabilities. Raissa vividly remembers, just before the verdict was read, she continuously prayed to the Almighty while enduring pain in a wheelchair.
At exactly 10:59 WIB, the anxiety melted away when the Chief Justice of the Constitutional Court (MK), Suhartoyo, granted part of their petition. Her facial expression was even captured on camera and became a major headline. Raissa thanked everyone for the support and made this victory a ‘most beautiful gift’ for all fighters with invisible disabilities due to chronic illnesses.
“I hope this is not just good on paper. I mean, little by little, it develops into integrated and fair policies, and more people become compassionate, showing care without pity but because they acknowledge it as a right and must be treated equally,” she hoped.
Gratitude also shone from the legal representative of Raissa and Deanda, Nur Fauzi Ramadhan. Although initially sceptical and facing rejections, the noble intention of conducting a judicial review of the Disabilities Law was purely to educate the public. Moreover, he firmly believes the state should encourage society not to marginalise friends with invisible disabilities.
“Sometimes the law lags behind the times, but the law can also serve as a tool for social engineering. One of them is using legal instruments to socialise our friends with invisible disabilities and so on,” Fauzi told detikX.
Fauzi also persuaded those sceptics to trust the intention of suing in the Constitutional Court. “That’s why I got WhatsApp messages from friends with disabilities, ‘Are you trying to revert to the medical model here?’ I said, No, not reverting to the medical model,” Fauzi said.
“So it’s not returning to the (medical) paradigm, but we need intervention from the medical discipline to assess this condition (whether) they have the illness, then they have barriers assessed by medical professionals,” he added.
Seen Out of the Corner of the Eye
Raissa’s struggle along with her peers is not without reason. Putri Dina Mardika (35), who has been suffering from Sjogren Syndrome, Seronegative Spondyloarthritis, and Autoimmune Dermatomyositis since 2019. In short, the complexity of this systemic autoimmune condition impairs the optimal function of her eyes and mouth. Not to mention, some areas of her skin feel hot like burns, and she often falls without cause.
Thus, this woman, who is also a lecturer in Informatics Engineering at one of Jakarta’s universities, often feels anxious about her body. “Every time I wake up, I always check from head to toe, ‘What’s wrong with me?’ Because I feel like I won’t be okay,” Putri told detikX.
When these symptoms strike suddenly, Putri often hides them from family, students, and even colleagues at campus. She admits it took a long time to gradually open up about her true self, having previously chosen to bury it deep. For Putri, while some people understand, not necessarily others do.
“I have to try to present myself as best as possible, even though I’ve fallen in front of the class several times. But I’m trying to (open up) that my condition is like this, this is my medical record, so gradually people around me understand,” Putri revealed.
In reality, the process…