In the coming weeks, we’ll be sharing the stories of the four champions we will be honoring at our Leading by Example gala on March 27. We will be recognizing several special people with intellectual and developmental disabilities who are making a difference: teaching the next generation of doctors; advocating at the State House for much-needed services and funding; and educating the community. You can follow along with these stories right here.
Jillian Berube has many varied interests. She loves to act, sing, and write lyrics. She took part in a theatre camp during high school summers; she’s been taking vocal lessons for nearly ten years; and she’s written books upon books of song lyrics. She once won the distinction of the “Not Your Average Chorus Member” award during a production of Into the Woods. She’s also very physically active. In addition to taking part in the Special Olympics, she swims and plays both soccer and baseball. But there is one interest in particular that allows her to be both creative and active: her tireless advocacy for better lives for individuals with intellectual and developmental disabilities (I/DD).
Jillian is a 29-year-old woman with Down syndrome. She holds important roles in advocacy organizations such as the Massachusetts Down Syndrome Congress (MDSC) and Mass Advocates Standing Strong (MASS). She was even the keynote speaker at MDSC’s 14th Annual Educator forum. She and her mother, Ann, have long been members of The Arc of Massachusetts community, most recently making valuable contributions to our 2018 Get Out the Vote campaign.
When Jillian was younger, her school wouldn’t make any accommodations for her to be included. She was fully segregated, and even separated from family members within the same classes. When she wanted to spend her lunch breaks with friends in the cafeteria like the other kids did, she was told she couldn’t, because she had to take food service instructional courses. Her school experience did not provide her with the supports and guidance for the life Jillian wanted for herself, so she and her mother advocated to make the program more geared toward individualized planning.
As a result of her experiences, some of her strongest advocacy is to ensure that all students with I/DD have access to fair and accurate Individualized Education Plans (IEPs). She wants all students to have a voice, access to the general curriculum, and be able to be included in general classes with other students. She also advocates for the right of students with I/DD to be able to take the MCAS, and wants people to have higher expectations for individuals with I/DD overall.
Through her lifelong pursuit of social inclusion, Jillian has learned how to advocate for herself and for others, and has found a strong community of friends along the way. Although she didn’t have many friends when she was younger, she now takes part in group activities. Ann notes that Jillian has really come out of her shell over the years. When the two began advocating, Jillian would hide behind her mother and let Ann do all the talking. Now, when they go places together to advocate, Jillian takes charge, and Ann is there as “Jillian’s mom.”
In the future, Jillian hopes to continue her pathway toward being a singer/songwriter. But she also has another passion that she would love to pursue. After taking classes in early childhood education through a MAICEI grant, Jillian volunteers at the local library and works in an after-school program with fifth graders. She is still working toward obtaining her degree, attending classes three days a week, and she would love to someday work full time in a job related to childcare. Ann hopes that Jillian will continue to live as independently as possible, and continue believing that she can do anything she puts her mind to.
Written by Katerina Daley, Development and Digital Media Associate
The Arc of Massachusetts 2019 gala, Leading by Example, will be held on March 27. To learn more, purchase tickets, or become a sponsor, please visit the official gala webpage.