Conversations about inclusion often talk about race and diversity, but one topic that people often leave off the table is ability. In honor of Down Syndrome Awareness Month, Michelle Sie Whitten, the President and CEO of the Global Down Syndrome Foundation, and her daughter, Sophia Whitten, who has Down Syndrome, joined Parenting Impossible to discuss the meaning of true inclusion for people with Down Syndrome and other disabilities in society, research, education, and more.
As the topic of diversity becomes more widespread, people with disabilities tend to be “featured” for their disabilities rather than being included as whole, unique human beings. Sophia and Michelle talk about Down Syndrome as only one small part of a person’s identity, not their entire identity
With this language in mind, one of the Global’s initiatives is to fund and support research that benefits people with Down Syndrome. The Foundation has donated more than $32 million to establish the first Down Syndrome research institute, supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. The Foundation also has several medical publications including Global Medical Care Guidelines for Adults with Down Syndrome, which was recently released after four years of research.
People who have Down Syndrome are more likely to develop Alzheimer’s, certain types of Leukemia, autoimmune diseases, and other health complications, and this research is an important part of the efforts needed to give these individuals a better quality of life for a longer period of time. This work is especially important during the pandemic, as people with intellectual and developmental disabilities are at high risk.
To support this research as well as its outreach efforts during the pandemic, the Global Down Syndrome Foundation continues to raise money. The Foundation’s largest fundraiser and the largest fundraiser for Down Syndrome in the world, the “Be Beautiful Be Yourself” Fashion Show, will be a virtual event this year on Saturday, Nov. 14, 2020. Sophia will be participating with several others as a model, and several celebrities will perform, including Jamie Foxx and his sister Diondra Dixon, as well as Amanda Booth and Qunicy Jones. You can join this event by visiting the website. Tickets are $25 and will support the Foundation’s mission.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.