{"id":53966,"date":"2019-06-19T10:13:20","date_gmt":"2019-06-19T13:13:20","guid":{"rendered":"https:\/\/www.rioonwatch.org\/?p=53966"},"modified":"2019-08-12T10:22:06","modified_gmt":"2019-08-12T13:22:06","slug":"a-mothers-fight-for-the-rights-of-her-children-with-dwarfism-on-the-outskirts-of-rio-de-janeiro","status":"publish","type":"post","link":"https:\/\/rioonwatch.org\/?p=53966","title":{"rendered":"A Mother\u2019s Fight for the Rights of Her Children with Dwarfism on the Outskirts of Rio de Janeiro"},"content":{"rendered":"

Clique aqui para Portugu\u00eas<\/strong><\/a><\/em><\/span><\/p>\n

This article is part of the ongoing series Challenges of Living in Mag\u00e9<\/a>.<\/em><\/p>\n

Ana Silva, 35, was 30 weeks pregnant when she found out that she was expecting twins with a disability. Her daughters Annah Beatriz and Lu\u00edsa were diagnosed with skeletal dysplasia<\/a>, a rare condition that can alter bone growth. The diagnosis was made at a doctor’s appointment in Rio\u2019s South Zone<\/a>. On the long journey back home to Mag\u00e9<\/a>, a municipality of Greater Rio’s<\/a> Baixada Fluminense<\/a> region, Silva decided to research skeletal dysplasia online since her doctor had not made it clear. It was then that she realized that her twins would have a type of dwarfism. Upon learning about their condition, Silva\u2014a single mother with a five-year-old son, Jo\u00e3o Miguel\u2014was most fearful when she realized that among the various types of skeletal dysplasia, it can be fatal in some cases. A genetic test confirmed that the twins had achondroplasia<\/a>, the most common type of skeletal dysplasia. This meant that the twins would have short stature and altered bone formation.<\/span><\/p>\n

\"\"<\/a><\/p>\n

Even in their first year of life, the twins faced many of the common challenges that affect disabled children in the Baixada: the challenge of getting access to specific treatments that they need in order to live a healthy life. Annah Beatriz and Lu\u00edsa are now three years old and as residents of Mag\u00e9, have already come across a great deal of bureaucracy and neglect in pursuit of medical care. Physical therapy is paramount for individuals with skeletal dysplasia, but the twins don\u2019t have regular access to these specialty services since they are not offered by the local government. Orthopedic care can only be accessed through the Children\u2019s Hospital<\/a> in Vila Valqueira, even further away, in Rio’s\u00a0West Zone<\/a>. For neurological care, they have to go to the Fernandes Figueira Institute<\/a> in the South Zone, where the initial diagnosis was made during Silva\u2019s pregnancy. When the twins needed an MRI scan, they had to go to a hospital in yet another municipality\u2014Nova Igua\u00e7u<\/a>\u2014and wait in line for two hours. <\/span><\/p>\n

The family faces transportation difficulties<\/a> to access medical care within their own neighborhood, too. Mag\u00e9, like other cities in the Baixada, has precarious urban infrastructure, which means that proper pavement, crosswalks, and traffic signs are few and far between. \u201cI don\u2019t have a support network here and my transportation difficulties are not just due to having daughters with disabilities but also simply because it\u2019s difficult to find safe walking routes around here,\u201d Silva said.<\/span><\/p>\n

\"\"<\/a><\/p>\n

Another of Silva’s daily concerns is her daughters\u2019 education. The girls go to a municipal preschool, but the facilities couldn\u2019t provide specially adapted furniture. This cost had to come out of Silva\u2019s pocket. Another fear relates to her daughters not having access to services such as banks and shops in the future because of society\u2019s attitudes towards people with dwarfism. Holding back tears, she says that people need to understand that dwarfism isn\u2019t just about having short limbs. \u201cDwarfism means not having a high quality of life. It means being dependent on other people. I always tell the other parents when we have meetings at the preschool that all children are equal, including children with disabilities. I tell them that in some places\u2014not here in Mag\u00e9, but in Rio and S\u00e3o Paulo<\/a>\u2014some banks have begun to be equipped with ATMs that are specially adapted for use by short people and people in wheelchairs. I mean, people need to start thinking more about this,\u201d she says. <\/span><\/p>\n

Silva is part of several support networks for people with disabilities. She realized that she needed to make more of these connections. For example, she\u2019s part of a Facebook group in which 2,000 members share their experiences with achondroplasia. The group is called “Achondroplasia Without Discrimination<\/a>,” but it also welcomes people with other disabilities. Silva is also in constant contact with K\u00eania Maria de Souza Rio, who has the same condition as her daughters. Souza Rio is a lawyer and is currently president of the Rio de Janeiro Dwarfism Association<\/a> (ANAERJ).<\/span><\/p>\n

\"\"<\/a><\/p>\n

Thanks to Souza Rio, Silva was able to participate in the association\u2019s first conference for people with dwarfism<\/a>, which took place in Rio de Janeiro in 2016. It was there, Silva believes, that she was able to get a better sense of which paths to follow in pursuing care for her daughters, especially in the legal field. For example, she experienced prejudice from the Public Defender\u2019s Office when requesting financial support for food: the Public Defender\u2019s Office didn\u2019t accept the twins\u2019 medical reports, meaning that she was offered less financial support than she is legally entitled to. <\/span><\/p>\n

Silva\u2019s contact with other people with disabilities also allows her to keep up to date with legal proceedings related to the 2015 Brazilian Inclusion of People with Disabilities Act<\/a>. This law brought about significant changes to the lives of the 45 million Brazilians living with disabilities, especially with regard to access to education. For Silva, having access to networks for people with disabilities is important because it allows her to share her questions, as well as her frustrations. Silva is not alone in the difficult struggle for disability rights. \u201cOften, my daughters only receive medical care when I complain via social networks. I\u2019ve never managed to get the Mag\u00e9 Secretary of Health<\/a> to provide care without having to shout about it and demand my rights.\u201d While the Brazilian Supreme Court<\/a> ruled in May 2019 that medication for rare diseases should be funded by the Brazilian government<\/a>, specific treatments for achondroplasia still don\u2019t exist.<\/span><\/p>\n

\"\"<\/a><\/p>\n

In Silva\u2019s opinion, it is undeniable that there is a long way to go before people with disabilities enjoy all the rights they are entitled to. People living in the peripheries\u2014in cities like Mag\u00e9 with poor access to health, education, and infrastructure\u2014have to have money in order to guarantee their basic rights. \u201cI\u2019ve been going to therapy for the past five months because I want and need to be useful to my children\u2014in order for them to be okay and in order to create a future for them in which I can have some of my own life, too,\u201d she insists.<\/span><\/p>\n

\"\"<\/a><\/p>\n

When asked what the future looks like for her daughters, Silva concludes that current challenges are so serious and urgent that she is only really focusing on guaranteeing basic levels of dignity for her children right now. But, as a woman, activist, and social work student, she says that her aim is to offer the same support that she received from social workers along the way to other women, especially poor women who have children with disabilities. \u201cMy desire to study social work was born out of the assistance that I myself received from social workers in all of the places where I take my daughters. They are the people who give me the guidance that I need. I would really like to help other mothers of children with disabilities in the future\u2014mothers like me who don\u2019t have a support network.”<\/span><\/p>\n

This article is part of the ongoing series Challenges of Living in Mag\u00e9<\/a>.<\/em><\/p>\n

Th\u00e1bara Garcia is a resident of Mag\u00e9, a teacher, and a member of the Roda de Mulheres da Baixada<\/a> collective. <\/span><\/i><\/p>\n","protected":false},"excerpt":{"rendered":"

Clique aqui para Portugu\u00eas This article is part of the ongoing series Challenges of Living in Mag\u00e9. Ana Silva, 35, was 30 weeks pregnant when she found out that she was expecting twins with a […]<\/a><\/p>\n<\/div>","protected":false},"author":78,"featured_media":53969,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[1288,1328,336],"tags":[460,2205,397,182,1197,107,577,755,1360,545,122,1025,69,301,270,3002,2971,156,21],"writer":[2968],"translator":[1401],"illustrator":[],"photographer":[],"class_list":{"0":"post-53966","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-violations","10":"tag-baixada-fluminense","11":"tag-disability","12":"tag-education","13":"tag-government-neglect","14":"tag-greater-rio","15":"tag-health","16":"tag-inclusion","17":"tag-infrastructure","18":"tag-mage","19":"tag-mobility","20":"tag-nova-iguacu","21":"tag-poor-quality-services","22":"tag-public-defenders","23":"tag-public-policy","24":"tag-resistance","25":"tag-series-challenges-of-living-in-mage","26":"tag-social-work","27":"tag-south-zone","28":"tag-west-zone","29":"writer-thabara-garcia","30":"translator-sarah-jacobs"},"_links":{"self":[{"href":"https:\/\/rioonwatch.org\/index.php?rest_route=\/wp\/v2\/posts\/53966","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\/78"}],"replies":[{"embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=53966"}],"version-history":[{"count":0,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=\/wp\/v2\/posts\/53966\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=\/wp\/v2\/media\/53969"}],"wp:attachment":[{"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=53966"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=53966"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=53966"},{"taxonomy":"writer","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fwriter&post=53966"},{"taxonomy":"translator","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftranslator&post=53966"},{"taxonomy":"illustrator","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fillustrator&post=53966"},{"taxonomy":"photographer","embeddable":true,"href":"https:\/\/rioonwatch.org\/index.php?rest_route=%2Fwp%2Fv2%2Fphotographer&post=53966"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}