In Janissa Lloyd’s world, ‘D’ is for Down syndrome and disability, not dissed, and if you make the mistake of committing the latter she’s likely to put you on the spot.
"Janissa felt at the time that she wasn’t getting the same attention as the advocate for whatever reasons," her mother, Elvia Salinas, recalled about a meeting in October 2018 in Washington, D.C., with a Congress member she did not name. "So she spoke up and she demanded that she would be treated the same as the other advocate. She did demand that just like the other advocate that she should also receive a business card and follow-up."
Lloyd, 15, is from Islip Terrace and is a sophomore at East Islip High School. She hopes to one day attend college, get a job and become a productive member of society, also know as adulting. In the meantime, she is all about "respect" and "inclusion from everyone," and she and her mom are working to make that happen, especially when it comes to raising awareness about Hispanic families whose children have disabilities.
Lloyd and Salinas meet with local and state leaders to advocate for the rights of individuals with disabilities. Salinas, 43, a native of El Salvador, said some Hispanics tend to hide from view when it comes to having a disability, leading to not enough representation in the community. She wants her daughter to get treated like anyone else.
"There's often a stigma associated with having a child with a disability which often results in a lack of representation," said Salinas, a mother of three. "I want other people to not be afraid if they get a diagnosis."
Down syndrome is a genetic disorder that results in an extra copy of chromosome 21, according to the U.S. Centers for Disease Control and Prevention. People with Down syndrome "usually have an IQ in the mildly to moderately low range and are slower to speak than other children," according to the CDC. Studies show that Hispanics and Latinos have a slightly higher rate of Down syndrome than other races.
After years of reading what Salinas described as negative material about children with Down syndrome, she created an Instagram account — @janissasworld — in October 2017 to document life moments with her daughter, who likes to travel and play basketball, so families who have children with the condition have positive outlets.
In July, the National Down Syndrome Society featured Lloyd in an ad campaign alongside U.S. elected officials as they celebrated the 30-year anniversary of the Americans with Disabilities Act and the legislation’s impact on the Down syndrome community.
"I can go out to dinner or the movies and be treated with the same respect as everyone else," Lloyd said in the video.
Though the coronavirus pandemic keeps them from doing those things and otherwise socializing, Salinas and Lloyd stay busy at home.
"I see my friends" through the computer, said Lloyd, who also helps her mom cook and enjoys making pizza, her favorite food.
HIGHER RATES OF DOWNS
Studies show that Hispanics have a higher rate of Down syndrome, the most common chromosomal condition in the United States, than other ethnicities. For every 10,000 live births in New York State, the rate per ethnicity:
American Indian, 15.2
Asian/Pacific Islanders, 8.2
Source: March of Dimes