{"id":81834,"date":"2025-10-15T14:46:45","date_gmt":"2025-10-15T17:46:45","guid":{"rendered":"https:\/\/rioonwatch.org\/?p=81834"},"modified":"2026-03-12T09:44:07","modified_gmt":"2026-03-12T12:44:07","slug":"mares-specials-combats-ableism-and-guarantees-rights-to-over-700-atypical-families-in-rio-de-janeiros-largest-favela-complex","status":"publish","type":"post","link":"https:\/\/rioonwatch.org\/?p=81834","title":{"rendered":"\u2018Mar\u00e9&#8217;s Specials\u2019 Combats Ableism and Guarantees Rights to Over 700 Atypical Families in Rio de Janeiro&#8217;s Largest Favela Complex"},"content":{"rendered":"<figure id=\"attachment_81835\" aria-describedby=\"caption-attachment-81835\" style=\"width: 2560px\" class=\"wp-caption aligncenter\"><a href=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mothers-and-children-gathered-during-the-Solidarity-Wardrobe-activity.-Photo-Ramon-Vellasco-scaled-1.jpg\"><img fetchpriority=\"high\" decoding=\"async\" class=\"wp-image-81835 size-full\" title=\"Mothers and children gathered during a Solidarity Wardrobe event. Through donations, health and hygiene supplies, toys, and clothing are distributed monthly. Photo: Ramon Vellasco\" src=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mothers-and-children-gathered-during-the-Solidarity-Wardrobe-activity.-Photo-Ramon-Vellasco-scaled-1.jpg\" alt=\"Mothers and children gathered during a Solidarity Wardrobe event. Through donations, health and hygiene supplies, toys, and clothing are distributed monthly. Photo: Ramon Vellasco\" width=\"2560\" height=\"1696\" srcset=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mothers-and-children-gathered-during-the-Solidarity-Wardrobe-activity.-Photo-Ramon-Vellasco-scaled-1.jpg 2560w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mothers-and-children-gathered-during-the-Solidarity-Wardrobe-activity.-Photo-Ramon-Vellasco-scaled-1-620x411.jpg 620w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mothers-and-children-gathered-during-the-Solidarity-Wardrobe-activity.-Photo-Ramon-Vellasco-scaled-1-949x629.jpg 949w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mothers-and-children-gathered-during-the-Solidarity-Wardrobe-activity.-Photo-Ramon-Vellasco-scaled-1-768x509.jpg 768w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mothers-and-children-gathered-during-the-Solidarity-Wardrobe-activity.-Photo-Ramon-Vellasco-scaled-1-1536x1018.jpg 1536w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mothers-and-children-gathered-during-the-Solidarity-Wardrobe-activity.-Photo-Ramon-Vellasco-scaled-1-2048x1357.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/a><figcaption id=\"caption-attachment-81835\" class=\"wp-caption-text\">Mothers and children gathered during a Solidarity Wardrobe event. Through donations, health and hygiene supplies, toys and clothing are distributed monthly. Photo: Ramon Vellasco<\/figcaption><\/figure>\n<p style=\"text-align: right;\"><a href=\"https:\/\/bit.ly\/4nJcNVG\" target=\"_blank\" rel=\"noopener\"><strong><em>Clique aqui para Portugu\u00eas<\/em><\/strong><img decoding=\"async\" class=\"alignright wp-image-23766 size-full\" src=\"https:\/\/www.rioonwatch.org\/wp-content\/uploads\/2012\/08\/PT-e1439583827971.png\" width=\"20\" height=\"20\" \/><\/a><\/p>\n<p><em>In <a href=\"https:\/\/bit.ly\/2IgZ9Y4\">Complexo da Mar\u00e9<\/a>, a group of 16 favelas with 140,000 residents in Rio de Janeiro&#8217;s <a href=\"https:\/\/bit.ly\/2IgR5qe\">North Zone<\/a>, the <a href=\"https:\/\/bit.ly\/3TRreKA\">Especiais da Mar\u00e9<\/a> project (Mar\u00e9&#8217;s Specials, in free translation) serves over 700 atypical families from across the region. On September 21, Brazilian National Day of Struggle for Persons with Disabilities, RioOnWatch celebrated Especiais da Mar\u00e9, a key initiative that builds <a href=\"https:\/\/bit.ly\/3anygh3\">ties of belonging and affection<\/a> among Mar\u00e9 residents with disabilities, as well as a much-needed network of support.<\/em><\/p>\n<p>The story of the Especiais da Mar\u00e9 collective is told by Alusca Cristina Silva Sousa, 33, the project\u2019s manager and the mother of Pedro Henrique, diagnosed with cerebral palsy and severe epilepsy. Sousa lived in <a href=\"https:\/\/bit.ly\/2KoTO5N\">Parque Uni\u00e3o<\/a>, one of the favelas that make up <a href=\"https:\/\/bit.ly\/2IgZ9Y4\">Mar\u00e9<\/a>, her entire life. She recently moved to <a href=\"https:\/\/bit.ly\/2P3XYyP\">Ilha do Governador<\/a> (Governor&#8217;s Island, also in the city&#8217;s North Zone), but because of the project and her own story, she can be found in Mar\u00e9 every day, working alongside the other managers.<\/p>\n<blockquote><p>\u201cThe project began in 2018 in a WhatsApp group, assisting eight mothers. The idea was encouraged by Luiz Costa, one of Pedro Henrique\u2019s teachers. Since then, we&#8217;ve registered so many families that we&#8217;ve created two WhatsApp groups. The first group runs from [the] <a href=\"http:\/\/bit.ly\/2nhB1O7\">Kelson&#8217;s<\/a> [community] to [the] <a href=\"https:\/\/rioonwatch.org\/?tag=morro-do-timbau\">Morro do Timbau<\/a> [favela], and the second from Timbau to <a href=\"https:\/\/bit.ly\/1Gd4bRb\">Vila do Jo\u00e3o<\/a>.\u201d \u2014 Alusca Cristina Silva Sousa<\/p><\/blockquote>\n<p>Especiais da Mar\u00e9 has developed partnerships with Brazil\u2019s national public health foundation (<a href=\"https:\/\/bit.ly\/2WRi6JK\">Fiocruz<\/a>) and the Federal University of Rio de Janeiro (<a href=\"https:\/\/bit.ly\/2G9KCND\">UFRJ<\/a>), offering cooking workshops for mothers through an additional project to promote information about health and nutrition through the culinary arts. Every Monday, atypical motherhood takes center stage through a discussion group held at the <a href=\"https:\/\/bit.ly\/45eSl8N\">Teot\u00f4nio Vilela Municipal School<\/a>, which offers psychotherapeutic support in partnership with the <a href=\"https:\/\/bit.ly\/4mmIP98\">Allos Association<\/a>. In addition, every Monday and Wednesday at 3pm, the children of Especiais da Mar\u00e9 participate in inclusive theater activities at the <a href=\"https:\/\/bit.ly\/3HoEgKg\">Mar\u00e9 Museum<\/a>.<\/p>\n<p>The Especiais da Mar\u00e9 project also provides support through two WhatsApp groups with atypical mothers and fathers, and promotes the monthly Solidarity Wardrobe meeting at the <a href=\"https:\/\/bit.ly\/3IDQfXd\">Seu Amaro Olympic Village<\/a>, where the managers distribute donated materials to atypical parents.<\/p>\n<p>The project has continued to evolve since 2018. Sousa says that, &#8220;with the growing demand from families and an increase in the project&#8217;s activities, we&#8217;re considering a new space for the headquarters.\u201d<\/p>\n<blockquote><p>\u201cThe space we now have for our headquarters is my old house. I divided it into two parts: one remains a house, which I put up for rent. The other part became the Especiais da Mar\u00e9 headquarters. We also have a space provided by the late Seu Amaro, in the Seu Amaro Olympic Village, where we run the Solidarity Wardrobe program. One day, our management team was talking about how we wanted to improve the meetings between mothers and needed a space for that. We went to Seu Amaro, who was responsible for and managed the Mar\u00e9 Olympic Village, and he gave us the space to store our donations\u2014clothes, toys, adult diapers, and even wheelchairs. He was a very important person for us because it was thanks to him that we were able to increase our visibility and have another space of care and support for families.\u201d \u2014 Alusca Cristina Silva Sousa<\/p><\/blockquote>\n<p>The project managers\u2014Alusca Cristina Silva Sousa, Lorrayne Gomes dos Santos, Val\u00e9ria Oliveira Viana, Ant\u00f4nia Maria Souza Pirangi, Francisca Juliana Mesquita, and Marcelly Olinto\u2014aim to relocate the headquarters, which is currently in Parque Uni\u00e3o, at Rua Larga, 25. This would expand the structure to accommodate more atypical mothers from Mar\u00e9.<\/p>\n<figure id=\"attachment_81839\" aria-describedby=\"caption-attachment-81839\" style=\"width: 2560px\" class=\"wp-caption aligncenter\"><a href=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Project-managers-from-Especiais-da-Mare.-Photo-Ramon-Vellasco-scaled-1.jpg\"><img decoding=\"async\" class=\"wp-image-81839 size-full\" title=\"Managers of the Especiais da Mar\u00e9 project. From left to right: Val\u00e9ria Oliveira Viana, Alusca Cristina Silva Sousa, and Francisca Juliana Mesquita. Photo: Ramon Vellasco\" src=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Project-managers-from-Especiais-da-Mare.-Photo-Ramon-Vellasco-scaled-1.jpg\" alt=\"Managers of the Especiais da Mar\u00e9 project. From left to right: Val\u00e9ria Oliveira Viana, Alusca Cristina Silva Sousa, and Francisca Juliana Mesquita. Photo: Ramon Vellasco\" width=\"2560\" height=\"1696\" srcset=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Project-managers-from-Especiais-da-Mare.-Photo-Ramon-Vellasco-scaled-1.jpg 2560w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Project-managers-from-Especiais-da-Mare.-Photo-Ramon-Vellasco-scaled-1-620x411.jpg 620w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Project-managers-from-Especiais-da-Mare.-Photo-Ramon-Vellasco-scaled-1-949x629.jpg 949w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Project-managers-from-Especiais-da-Mare.-Photo-Ramon-Vellasco-scaled-1-768x509.jpg 768w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Project-managers-from-Especiais-da-Mare.-Photo-Ramon-Vellasco-scaled-1-1536x1018.jpg 1536w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Project-managers-from-Especiais-da-Mare.-Photo-Ramon-Vellasco-scaled-1-2048x1357.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/a><figcaption id=\"caption-attachment-81839\" class=\"wp-caption-text\">Managers of the Especiais da Mar\u00e9 project. From left to right: Val\u00e9ria Oliveira Viana, Alusca Cristina Silva Sousa, and Francisca Juliana Mesquita. Photo: Ramon Vellasco<\/figcaption><\/figure>\n<p>\u201cOur project is mostly made up of single mothers, but we have some fathers and partners who are present and participate in the group. This one here is very involved,\u201d says Sousa, pointing outside the headquarters, where Adilson da Concei\u00e7\u00e3o Santos, an atypical father, is organizing donated materials in the car heading for the Vila do Jo\u00e3o favela.<\/p>\n<p>The group was formed when these atypical parents identified that they faced common problems in their daily lives, such as a lack of information and support in public health and education services, as well as difficulties with accessibility and mobility. Additionally, they shared the desire to combat prejudice and <a href=\"https:\/\/bit.ly\/4q1Nn7Q\">ableism<\/a>, especially within the favela.<\/p>\n<blockquote class=\"instagram-media\" style=\"background: #FFF; border: 0; border-radius: 3px; box-shadow: 0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width: 540px; min-width: 326px; padding: 0; width: calc(100% - 2px);\" data-instgrm-captioned=\"\" data-instgrm-permalink=\"https:\/\/www.instagram.com\/p\/DIsDCi0xoBB\/?utm_source=ig_embed&amp;utm_campaign=loading\" data-instgrm-version=\"14\">\n<div style=\"padding: 16px;\">\n<p>&nbsp;<\/p>\n<div style=\"display: flex; flex-direction: row; align-items: center;\">\n<div style=\"background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;\"><\/div>\n<div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center;\">\n<div style=\"background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;\"><\/div>\n<div style=\"background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;\"><\/div>\n<\/div>\n<\/div>\n<div style=\"padding: 19% 0;\"><\/div>\n<div style=\"display: block; height: 50px; margin: 0 auto 12px; width: 50px;\"><\/div>\n<div style=\"padding-top: 8px;\">\n<div style=\"color: #3897f0; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;\">Ver essa foto no Instagram<\/div>\n<\/div>\n<div style=\"padding: 12.5% 0;\"><\/div>\n<div style=\"display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;\">\n<div>\n<div style=\"background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);\"><\/div>\n<div style=\"background-color: #f4f4f4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;\"><\/div>\n<div style=\"background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);\"><\/div>\n<\/div>\n<div style=\"margin-left: 8px;\">\n<div style=\"background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;\"><\/div>\n<div style=\"width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg);\"><\/div>\n<\/div>\n<div style=\"margin-left: auto;\">\n<div style=\"width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);\"><\/div>\n<div style=\"background-color: #f4f4f4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);\"><\/div>\n<div style=\"width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);\"><\/div>\n<\/div>\n<\/div>\n<div style=\"display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;\">\n<div style=\"background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;\"><\/div>\n<div style=\"background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;\"><\/div>\n<\/div>\n<p>&nbsp;<\/p>\n<p style=\"color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;\"><a style=\"color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;\" href=\"https:\/\/www.instagram.com\/p\/DIsDCi0xoBB\/?utm_source=ig_embed&amp;utm_campaign=loading\" target=\"_blank\" rel=\"noopener\">Uma publica\u00e7\u00e3o compartilhada por Especiais da Mar\u00e9 (@especiaisdamare)<\/a><\/p>\n<\/div>\n<\/blockquote>\n<p><script async src=\"\/\/www.instagram.com\/embed.js\"><\/script><\/p>\n<p>Fl\u00e1via de Lima Andrade, 52, says her biggest challenge with daughter Juliana, 21, is mobility and accessibility in the favela. Juliana has spinal muscular atrophy (SMA) and, due to the difficulty of moving around inside her own home, lives exclusively on the second floor of the house.<\/p>\n<blockquote><p>\u201cJuliana was diagnosed at age six. She was admitted to the ICU many times. Over time, she gradually lost more and more movement in her body. Because of the delay in the diagnosis, we had difficulty accessing care, physical therapy, and medication.\u201d \u2014 Fl\u00e1via de Lima Andrade<\/p><\/blockquote>\n<h3>Challenges and Achievements in Educating Atypical Children in the Favela<\/h3>\n<p>Despite the challenges faced, Andrade\u2019s daughter managed to finish high school.<\/p>\n<blockquote><p>\u201cShe studied at the <a href=\"https:\/\/bit.ly\/4ofW79E\">Yuri Gagarin Public School<\/a>, in <a href=\"https:\/\/bit.ly\/34r17So\">Bonsucesso<\/a>, and had a van that picked her up and took her to school. She attended the <a href=\"https:\/\/bit.ly\/3GEQfG1\">Olga Ben\u00e1rio Prestes State School<\/a>, in <a href=\"https:\/\/bit.ly\/2Ro0rmP\">Ramos<\/a>, and had a car that took her there. Her last school was the <a href=\"https:\/\/bit.ly\/44GsOVY\">Dilermando Cruz Municipal School<\/a>. That was a very difficult time because there was no transportation [available] and we had to take the BRT [to get Juliana to school].\u201d \u2014 Fl\u00e1via de Lima Andrade<\/p><\/blockquote>\n<p>Now that Juliana has graduated, Andrade says her daughter wants to take the <em>vestibular<\/em> [college entrance exam]: \u201cShe\u2019s studying and getting ready for it.\u201d<\/p>\n<p>Luiz Costa, 66, is a psychologist and teacher in the Rio de Janeiro municipal school system and currently lives in Mag\u00e9, a municipality in Greater Rio de Janeiro\u2019s Baixada Fluminense region. He worked as a teacher in Rio for 20 years and taught in Mar\u00e9 for 15 of those years. In 2015, he taught his last classes at the Teot\u00f4nio Vilela Municipal School. It was also the year he began to have more contact with Alusca Sousa and her son, Pedro Henrique.<\/p>\n<blockquote><p>\u201cI worked with classes that included students with age-grade gaps, students with learning difficulties, and for a year I worked exclusively with students with autism. In every public school, there\u2019s at least one child with a disability. So I was used to working with this kind of routine.\u201d \u2014 Luiz Costa<\/p><\/blockquote>\n<p>The teacher became involved in home-based educational support and had his first contact with Alusca Sousa, Pedro Henrique, and many other atypical families from Mar\u00e9 at the Teot\u00f4nio Vilela Municipal School. Based on his experiences with these families in the school environment, Costa encouraged the creation of Especiais da Mar\u00e9, recognizing the need for mutual assistance and a network of community support.<\/p>\n<blockquote><p>\u201cBesides being a teacher, Luiz lived in Mar\u00e9, so he saw me taking care of Pedro and came up with the idea of creating a group. He taught other children with disabilities and was also aware of how other families coped. The goal was to support and strengthen the bond between mothers and fathers of children with disabilities, share information, and improve the lives of atypical families.\u201d \u2014 Alusca Cristina Silva Sousa<\/p><\/blockquote>\n<p>For Costa, education and health professionals must be committed and compassionate, as they can make a positive difference in the lives of many atypical children. Unfortunately, the teacher has seen many cases like Pedro Henrique\u2019s, in which, whether through omission or medical error, children are denied the right to full development.<\/p>\n<blockquote><p>\u201cI was there when Pedro said \u2018mommy\u2019 for the first time. He was around six or seven years old. [When Pedro was born], the doctors told Alusca to go home, but not to expect much from her son. In fact, they should have informed her about the difficulties during childbirth and that she should have medical follow-up and do therapy and activities [with him] to minimize the problems he might face [later on]. This kind of medical error was very common at the time. It still happens today, but there\u2019s now a growing movement of institutes that are concerned with the health of these children.\u201d \u2014 Luiz Costa<\/p><\/blockquote>\n<h3>Silence at Birth, Silenced in Life<\/h3>\n<p>According to the <a href=\"https:\/\/bit.ly\/3ZpMquy\">2019 Mar\u00e9 Population Census<\/a>, conducted by <a href=\"https:\/\/bit.ly\/2JViAZB\">Redes da Mar\u00e9<\/a>, 1,678 households had at least one resident with a mental disorder, cognitive impairment, or physical disability. Thus, it can be said that, of Mar\u00e9\u2019s total population of 140,000 residents, at least 1.2% are people with disabilities, and 3.5% of the 47,758 households surveyed in the census are home to this population.<\/p>\n<p>Sousa says she went through moments of great suffering and doubt during her son\u2019s hospitalization at <a href=\"https:\/\/bit.ly\/3TpVDzf\">Fernando Magalh\u00e3es Maternity Hospital<\/a>, due to a medical error and the doctors\u2019 silence regarding Pedro Henrique\u2019s birth. Her son spent 22 days in the ICU and was discharged with cerebral palsy.<\/p>\n<p>She also says that during her prenatal care in Mar\u00e9, there were no signs of complications in the pregnancy, which reinforces her claim of medical malpractice. \u201cI just wanted to know how my son was doing, and they [at the hospital] wouldn\u2019t say anything. They wouldn\u2019t even let me hold him or see him. At the time, I just wanted to get out of there and hold Pedro Henrique,\u201d she recalls.<\/p>\n<p>While organizing donated materials\u2014adult diapers, medicine, wheelchairs, and walkers\u2014to deliver to families in Vila do Jo\u00e3o alongside Adilson, 50, atypical father of Jhovane and member of Especiais da Mar\u00e9, Sousa talks about how emotional she gets.<\/p>\n<figure id=\"attachment_81845\" aria-describedby=\"caption-attachment-81845\" style=\"width: 500px\" class=\"wp-caption alignright\"><a href=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mare-Households-Census-published-data-on-the-number-of-Mare-residents-with-psychiatric-disorders-cognitive-impairments-or-physical-disabilities.-Source-Mare-Population-Census.png\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-81845\" title=\"The Mar\u00e9 Population Census (2019) published data on the number of Mar\u00e9 residents with psychiatric disorders, cognitive impairments, or physical disabilities. Source: Mar\u00e9 Population Census\" src=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mare-Households-Census-published-data-on-the-number-of-Mare-residents-with-psychiatric-disorders-cognitive-impairments-or-physical-disabilities.-Source-Mare-Population-Census-583x620.png\" alt=\"The Mar\u00e9 Population Census (2019) published data on the number of Mar\u00e9 residents with psychiatric disorders, cognitive impairments, or physical disabilities. Source: Mar\u00e9 Population Census\" width=\"500\" height=\"531\" srcset=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mare-Households-Census-published-data-on-the-number-of-Mare-residents-with-psychiatric-disorders-cognitive-impairments-or-physical-disabilities.-Source-Mare-Population-Census-583x620.png 583w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mare-Households-Census-published-data-on-the-number-of-Mare-residents-with-psychiatric-disorders-cognitive-impairments-or-physical-disabilities.-Source-Mare-Population-Census-592x629.png 592w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Mare-Households-Census-published-data-on-the-number-of-Mare-residents-with-psychiatric-disorders-cognitive-impairments-or-physical-disabilities.-Source-Mare-Population-Census.png 731w\" sizes=\"(max-width: 500px) 100vw, 500px\" \/><\/a><figcaption id=\"caption-attachment-81845\" class=\"wp-caption-text\">The Mar\u00e9 Population Census (2019) published data on the number of Mar\u00e9 residents with psychiatric disorders, cognitive impairments, or physical disabilities. Source: Mar\u00e9 Population Census<\/figcaption><\/figure>\n<p>She says she sought justice after a long time, looking for information on all the services available for her child. Faced with the <a href=\"https:\/\/bit.ly\/1SQPOTc\">State\u2019s negligence<\/a>, she was forced to turn to the private healthcare system to protect her son\u2019s right to full development.<\/p>\n<p>When Pedro Henrique was two years old, Sousa began to see the costs of caring for her son rise rapidly. So she decided to file a lawsuit against the State. Thirteen years have gone by, and although the case was decided in the family\u2019s favor, she says the State has still not offered any kind of support to Pedro Henrique or his relatives.<\/p>\n<blockquote><p>\u201cI only found out about Pedro\u2019s disability three months after he was born, during a private consultation. It\u2019s very common for mothers to learn of the diagnosis months after giving birth. We don\u2019t get proper medical follow-up, we don\u2019t have access to quality services, and we\u2019re not told what happened during delivery.\u201d \u2014 Alusca Cristina Silva Sousa<\/p><\/blockquote>\n<p>Like Sousa, Adilson Santos recounts the same ordeal with the State over the care of his son Jhovane.<\/p>\n<p>With a family structure different from Sousa&#8217;s, Santos is friends with Jhovane&#8217;s mother and shares a house with her. Although he does not share any genes with the child, he discussed the possibility of taking on parental responsibility, and she agreed. His son, Jhovane, is 11 years old and in the fifth grade at the <a href=\"https:\/\/bit.ly\/4lJfruc\">Leonel de Moura Brizola CIEP<\/a>, a regular public school in Ramos. He has cerebral palsy, microcephaly, and a heart condition.<\/p>\n<p>The father says he officially recognized his son\u2019s paternity when the boy was only three years old.<\/p>\n<blockquote><p>\u201cJhovane came into my life when he was just one year old. There was a bond of love and care between us, and I decided I wanted to be closer to him. So I talked to his mother, and we started living together: me, Jhovane, Jhovane\u2019s mother, and her other daughter. Jhovane\u2019s mother only found out she was pregnant at seven months, and during that time, she was working a formal job. She should have been receiving prenatal care, but her boss began harassing her, saying that if she missed work for her checkups, she\u2019d be fired. For that reason, she didn\u2019t get prenatal care.\u201d \u2014 Adilson da Concei\u00e7\u00e3o Santos<\/p><\/blockquote>\n<p>The father says that Jhovane was born at Miguel Couto Hospital and that, during delivery, doctors discovered his mother had congenital syphilis. To ensure the baby wouldn\u2019t develop health problems, Jhovane was given a ten-day course of antibiotics. However, health professionals failed to test him for microcephaly\u2014a necessary procedure given his mother\u2019s condition.<\/p>\n<p>Jhovane\u2019s microcephaly diagnosis was communicated to his family at Bonsucesso General Hospital when he was just over a year old. Only then were his parents able to apply for the Continuous Cash Benefit (<a href=\"http:\/\/bit.ly\/2HwS7zf\">BPC<\/a>), a right granted to people with disabilities in situations of socioeconomic vulnerability, as established by the Organic Law of Social Assistance (<a href=\"https:\/\/bit.ly\/4k9DH7g\">LOAS<\/a>).<\/p>\n<p>At the age of four, Jhovane began receiving care through the <a href=\"https:\/\/bit.ly\/43s1g5x\">Sarah Network of Rehabilitation Hospitals<\/a> and has been followed by the hospital ever since. \u201c[Today,] Jhovane can eat, drink, and move around in his wheelchair. He does all of this with difficulty, but he manages,\u201d says Santos, stressing that although Jhovane can do many things on his own, his son still depends heavily on support.<\/p>\n<blockquote><p>\u201cHe wears diapers, can\u2019t go to the bathroom, and can\u2019t get out of bed, so he\u2019s still very dependent. Now that he\u2019s older, moving around the house has become harder. His route is from bed to wheelchair to sofa and back again. During and after the pandemic, Jhovane stopped going to physical therapy because of the shutdown and the difficulties in accessing care due to his health, which further affected his movement and caused atrophy in his knee. Unfortunately, people either don\u2019t know or don\u2019t want to know about other people\u2019s realities, and they treat people with disabilities with prejudice, diminishing their lives and experiences. Usually, they want to fit everything into standards and boxes, and end up excluding people with disabilities. Especiais da Mar\u00e9 has become a space to bring atypical families closer together and improve living conditions for children and young people with disabilities.\u201d \u2014 Adilson da Concei\u00e7\u00e3o Santos<\/p><\/blockquote>\n<p>Gabriele da Concei\u00e7\u00e3o, 30, mother of Gael, 5, who was diagnosed with epilepsy at eight months, agrees with Sousa and Santos on the crucial role Especiais da Mar\u00e9 has played in her life. It was only through the group, alerted by other mothers, that da Concei\u00e7\u00e3o realized her son might also be on the autism spectrum, which led her to seek help. In August 2024, at the age of four, Gael was officially diagnosed with level-two autism, with functional language impairment.<\/p>\n<blockquote><p>\u201cI had Gael during the pandemic. It was very difficult. Even though I had my husband, I felt completely overwhelmed caring for Gael. The whole family noticed that something was different about him, but no one said anything. He was slow to speak and also showed unusual behaviors. It took me a long time to get my son\u2019s autism diagnosis. I only found out about his autism when I joined Especiais da Mar\u00e9, after other mothers shared their experiences with me.\u201d \u2014 Gabriele da Concei\u00e7\u00e3o<\/p><\/blockquote>\n<figure id=\"attachment_81894\" aria-describedby=\"caption-attachment-81894\" style=\"width: 2560px\" class=\"wp-caption aligncenter\"><a href=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Gael-plays-and-has-fun-like-any-other-child-has-the-right-to-but-not-all-have-guaranteed-access-by-the-State.-Photo-Ramon-Vellasco-scaled-1.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-81894 size-full\" title=\"Gael plays and has fun, as is the right of every atypical child. However, access to this is not guaranteed by the State for everyone. Photo: Ramon Vellasco\" src=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Gael-plays-and-has-fun-like-any-other-child-has-the-right-to-but-not-all-have-guaranteed-access-by-the-State.-Photo-Ramon-Vellasco-scaled-1.jpg\" alt=\"Gael plays and has fun, as is the right of every atypical child. However, access to this is not guaranteed by the State for everyone. Photo: Ramon Vellasco\" width=\"2560\" height=\"1696\" srcset=\"https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Gael-plays-and-has-fun-like-any-other-child-has-the-right-to-but-not-all-have-guaranteed-access-by-the-State.-Photo-Ramon-Vellasco-scaled-1.jpg 2560w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Gael-plays-and-has-fun-like-any-other-child-has-the-right-to-but-not-all-have-guaranteed-access-by-the-State.-Photo-Ramon-Vellasco-scaled-1-620x411.jpg 620w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Gael-plays-and-has-fun-like-any-other-child-has-the-right-to-but-not-all-have-guaranteed-access-by-the-State.-Photo-Ramon-Vellasco-scaled-1-949x629.jpg 949w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Gael-plays-and-has-fun-like-any-other-child-has-the-right-to-but-not-all-have-guaranteed-access-by-the-State.-Photo-Ramon-Vellasco-scaled-1-768x509.jpg 768w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Gael-plays-and-has-fun-like-any-other-child-has-the-right-to-but-not-all-have-guaranteed-access-by-the-State.-Photo-Ramon-Vellasco-scaled-1-1536x1018.jpg 1536w, https:\/\/rioonwatch.org\/wp-content\/uploads\/2025\/10\/Gael-plays-and-has-fun-like-any-other-child-has-the-right-to-but-not-all-have-guaranteed-access-by-the-State.-Photo-Ramon-Vellasco-scaled-1-2048x1357.jpg 2048w\" sizes=\"(max-width: 2560px) 100vw, 2560px\" \/><\/a><figcaption id=\"caption-attachment-81894\" class=\"wp-caption-text\">Gael plays and has fun, as is the right of every atypical child. However, access to this is not guaranteed by the State for everyone. Photo: Ramon Vellasco<\/figcaption><\/figure>\n<p>Even with the mothers sharing their experiences, da Concei\u00e7\u00e3o could only take action for her son once she had a medical report confirming his neuroatypicality.<\/p>\n<blockquote><p>\u201cThe doctors refused to give Gael a medical report stating he has autism. That makes caring for a child extremely difficult. It was really hard to access treatment without a medical report confirming [the diagnosis]&#8230; I couldn&#8217;t seek therapy or treatment&#8230; We also lack access to social welfare benefits, like the BPC.\u201d \u2014 Gabriele da Concei\u00e7\u00e3o<\/p><\/blockquote>\n<p>Without medical care, without social benefits\u2014to which families are entitled but unable to access\u2014and with few opportunities for quality public services or a support network, many mothers of people with disabilities face socioeconomic vulnerability and the absence of State support. These mothers shoulder the costs and care of their children alone. As a result, they often suffer from depression, anxiety, and other disorders.<\/p>\n<p>As revealed by the <a href=\"https:\/\/bit.ly\/3FSFwXU\">Mar\u00e9 Population Census<\/a>, this is one aspect of the State\u2019s neglect of people with disabilities and residents of the favela.<\/p>\n<blockquote><p>\u201cIn a social context of limited access to health services and schooling, it is not difficult to imagine that there are people with intellectual disabilities who have not been diagnosed or received medical care, and as a result, their disability may not have been recognized by themselves or their families&#8230; The bigger problem is that poor conditions in accessibility and urban cleanliness, access to health facilities and professionals, income, and other factors\u2014such as daily violence stemming from both the fight against and internal disputes over the drug trade\u2014create serious obstacles for people with more severe disabilities and\/or disorders in exercising their fundamental human right to come and go as they please. In this context, the physical and psychological limitations of individuals are exacerbated by restrictions on care, accessibility, and specialized support.\u201d \u2014 Mar\u00e9 Population Census<\/p><\/blockquote>\n<p>Faced with a reality in which the State provides little or no support, Especiais da Mar\u00e9 offers a network of care, guidance, and follow-up for atypical families in Mar\u00e9. In true \u201c<a href=\"https:\/\/bit.ly\/1Qt2jC3\">by us for us<\/a>\u201d fashion, Especiais da Mar\u00e9 is made up mostly of mothers who, despite all the challenges, manage to improve the lives of atypical children and families in Mar\u00e9.<\/p>\n<h3>To find out what the institution needs, visit Especiais da Mar\u00e9&#8217;s social media pages (<a href=\"https:\/\/bit.ly\/4oGi9m5\">Instagram<\/a> and <a href=\"https:\/\/bit.ly\/4mMiFwZ\">Facebook<\/a>) or contact them via WhatsApp: +5521 97222 8603.<\/h3>\n<p><em>About the author: Ramon Vellasco is a freelance photojournalist and reporter, born and raised in Vila da Penha. He focuses on issues related to human rights, culture, education, diversity, and marginalized social groups, primarily working in peripheral, favela, areas.<\/em><\/p>\n<hr \/>\n<h4>Support\u00a0RioOnWatch\u2019s tireless, critical and cutting-edge hyperlocal journalism, online community organizing meetings, and direct support to favelas\u00a0<a href=\"http:\/\/bit.ly\/FavelaCovidResponse\" target=\"_blank\" rel=\"noopener\">by clicking here<\/a>.<\/h4>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Clique aqui para Portugu\u00eas In Complexo da Mar\u00e9, a group of 16 favelas with 140,000 residents in Rio de Janeiro&#8217;s North Zone, the Especiais da Mar\u00e9 project (Mar\u00e9&#8217;s Specials, in free translation) serves over 700 <a class=\"mh-excerpt-more\" href=\"https:\/\/rioonwatch.org\/?p=81834\" title=\"\u2018Mar\u00e9&#8217;s Specials\u2019 Combats Ableism and Guarantees Rights to Over 700 Atypical Families in Rio de Janeiro&#8217;s Largest Favela Complex\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":245,"featured_media":81835,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"template-full.php","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[1288,1328,1290,1503,329,336],"tags":[750,258,280,910,2205,182,350,107,545,37,1990,744,558,1011,1019,1008,535,1017],"writer":[3696],"translator":[3658],"illustrator":[],"photographer":[3730],"class_list":{"0":"post-81834","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-highlight","8":"category-by-community-contributors","9":"category-civilsociety","10":"category-opportunities-to-support-favelas","11":"category-solutions","12":"category-violations","13":"tag-access","14":"tag-community-solution","15":"tag-complexo-da-mare","16":"tag-creative-organizing","17":"tag-disability","18":"tag-government-neglect","19":"tag-handicap-access","20":"tag-health","21":"tag-mobility","22":"tag-north-zone","23":"tag-nos-por-nos","24":"tag-policy-critique","25":"tag-prejudice","26":"tag-right-to-come-and-go","27":"tag-right-to-education","28":"tag-right-to-the-city","29":"tag-sanitation","30":"tag-childrens-rights","31":"writer-ramon-vellasco","32":"translator-hannah-mckenzie","33":"photographer-ramon-vellasco"},"_links":{"self":[{"href":"https:\/\/rioonwatch.org\/index.php?rest_route=\/wp\/v2\/posts\/81834","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rioonwatch.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rioonwatch.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=\/wp\/v2\/users\/245"}],"replies":[{"embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=81834"}],"version-history":[{"count":3,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=\/wp\/v2\/posts\/81834\/revisions"}],"predecessor-version":[{"id":81906,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=\/wp\/v2\/posts\/81834\/revisions\/81906"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=\/wp\/v2\/media\/81835"}],"wp:attachment":[{"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=81834"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=81834"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=81834"},{"taxonomy":"writer","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fwriter&post=81834"},{"taxonomy":"translator","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftranslator&post=81834"},{"taxonomy":"illustrator","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fillustrator&post=81834"},{"taxonomy":"photographer","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fphotographer&post=81834"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}