A mom’s advocacy for children with disabilities in Brazil

Lidiane Jacomini on being a mother to children with disabilities in Brazil and how she became an advocate on a national level.

Lidiane at the center holding hands with two other women. They face the camera and stand behind a school colorful boar.

Lidiane Jacomini lives in Brazil and is a mother of five children, two of whom have disabilities. Among them, Micaella, a six-year-old with deafblindness and complex health issues, and two-year-old Lucas who has a visual impairment.

Like many mothers, Lidiane’s daily life includes school drop-offs, making lunches, helping with homework, and caring for her children. However, her life changed significantly when Micaella was born, leading Lidiane on a journey to understand the unique challenges of raising a child with deafblindness and multiple disabilities.

In addition to her role as a mother and wife, Lidiane also works as the Perkins Family Coordinator for Brazil. Her work involves supporting families in similar situations as herself and connecting them with a community. At the same time, she builds trust between schools and parents, ensuring families stay included in the process as equal partners.

As Lidiane found her footing as a mother and community leader, she encountered injustices all around the country. Children like Micaella were not learning, and what was being done was insufficient to change the situation.

Lidiane’s journey: a mother turned disability advocate

When she learned that her child, Micaella, had deafblindness, she faced uncertainty and fear for her daughter’s future. Determined to give Micaella the best life possible, Lidiane immersed herself in the world of deafblindness inclusive education, and became an advocate for children with disabilities in her community.

A mother holds her daughter on her lap and both are laughing.

But it was not until Micaella reached the school year age that Lidiane started facing one of the biggest challenges. Though the law in Brazil guaranteed the right of children with disabilities to enroll in regular schools, for three years, despite following all the bureaucratic procedures and enrolling Micaella in a school,  attendance remained a distant dream.

The school wasn’t prepared to accommodate her unique needs, particularly in the realm of deafblindness and complex disabilities, which Micaella grappled with. She would require adjustments to school hours, meal arrangements, and physical accommodations. Moreover, the absence of teachers trained in alternative communication systems further compounded the issue.

Over several years, Lidiane tirelessly advocated for her daughter’s needs within an inclusive school system but encountered minimal support. It wasn’t until recently that the city’s education department entered an agreement with a specialized education entity from another location so Micaella could receive specialized support. The solution is still not ideal, as Micaella needs to travel 2 hours outside her hometown to get to the new school.

Looking for an answer when Micaella was two years old,  Lidiane became involved with Perkins in Brazil, providing her with a platform to advocate for Micaella and other children and their families. Lidiane knows firsthand the difficulties of accessing healthcare, education, and support services for children with disabilities. Perkins provided the platform Lidiane needed to voice her passionate beliefs. She believes that every child, regardless of their disability, deserves a high-quality education.

My daughter has the right to exist; she has the right to be happy, and she has the right to be alive. I am tired of having laws that are not being enforced so they don’t have practical effect in real life. Speeches are empty words.

Lidiane Jacomini, Perkins Family Coordinator for Brazil

Fostering systemic change at the national level

Lidiane is also a member of Brazil’s strategic working group, “Sentidos-Perkins Brazil,” a coalition of civil society and government organizations coordinated by Perkins working to elevate the quality of education for children with disabilities through an inclusive lens. The group is another component of the Perkins Model Programs Approach in Brazil, especially in bringing systemic transformation to the education of children with disabilities.

In August 2023, Lidiane, with members of the strategic working group and Perkins staff, traveled to Brasilia, the country’s capital, to meet with federal government officials. Their goal was to request a public hearing, a critical step in improving inclusive education for students with disabilities.

Five women seating around a round table having a conversation

Congresswoman Érika Kokay was touched by Lidiane’s story and recognized this group’s efforts to transform the lives of all children with disabilities by supporting the request for a public hearing. These advocates also received positive responses from three government groups: the Secretariat of Institutional Relations, the Ministry of Education and Culture, and the Ministry of Human Rights. For Lidiane, going to these meetings was a huge accomplishment but reminded her of how far they still needed to go in ensuring basic rights for children like Micaella.

Even though Brazilian law established some rights for people with disabilities, Lidiane felt like she was constantly begging for these laws to be taken seriously.  At the end of a long day, Lidiane reflected on the meetings, “It was an opportunity for me to feel energized and to emphasize that my struggle is significant and can be heard. After all, we should embrace every opportunity and occupy spaces in pursuit of our rights.”

Lidiane’s leadership: a ripple effect

Lidiane’s leadership has been instrumental in the success of Perkins’ International Programs in Brazil. She fostered relationships with government officials and demonstrated the needs of children with disabilities. 

A woman whose back is turned facing us engages a room full of parents.

The fight is still not over, as the meetings with Brazil’s government were just one step towards a broader goal so that every child can access good quality education. As a Family Coordinator for all 11 programs Perkins has in Brazil, Lidiane works every day so other families can receive the same support she had over the years. Her goal is to empower more families and inspire more people so that those with disabilities can face fewer barriers throughout their lives.

Lidiane’s unshakable determination keeps her moving forward, driven by the simple but powerful act of speaking up.

Today, I can speak. I can speak without any shame or burden. I can say that Micaella exists, that she is more than people judge, and can do more than they imagine. For her, the sky is the limit.”

Lidiane Jacomini, Perkins Family Coordinator for Brazil

We are building a world where every child belongs

Lidiane’s story reminds us that anyone can ignite change in the world, no matter the challenges. If you believe every child deserves an opportunity to learn, support our work today.

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