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DEI what does it stand for? We recently discussed the letter ‘D’ and shared how Diversity is a part of our community. Continuing our discussion, we will discuss the letter ‘E’.
Equity: the state of being equal, especially in status, rights, and opportunities
In the late 1800s, the supreme court decided on a case that was known for introducing the doctrine, “separate but equal”. On May 18, 1896 the case of Plessy v. Ferguson was decided on by the U.S. Supreme Court which would be the first big case to question the Fourteenth Amendment which prohibits the states from denying equal protection to any person within its jurisdiction. The most significant impact of this decision at that time was that it seemed to provide constitutional support to racial segregation laws, until 1954 when it was overruled by another U.S. Supreme Court decision in the case of Brown v. Board of Education. Over time we have had many amazing individuals fight for racial equality. Martin Luther King dedicated his life to leading the Civil Rights movement and pushing for equality amongst African Americans. He was most known for his “I Have A Dream Speech” in which he speaks about how all of us should be considered equal from birth and we shall have equal access to the liberties that life offers to us all. Cesar Chavez was a Latino civil rights activist who not only fought for cultural acceptance, but he wanted the world to understand that preserving or embracing each other’s cultures wasn’t a form of disrespect, rather it was the social change needed in the world to establish true equality. There are many other activists that have fought and spoken over the years and while we have made progress, some inequalities still remain.
Research has been done within the field of Dravet syndrome, rare disease, and in the medical community overall and statistics continue to show that the African American and Hispanic communities receive less medical care amongst the approximate 331 million people that occupy the United States, per the 2021 US Census Bureau. We at DSF do our best to register all families that we come in contact with who have a loved one diagnosed with Dravet and from our own data we are able to share that less than 60% of our community is of Hispanic or African American decent. Our of DSFs industry partners recently completed a study that identified medical access, cultural beliefs, income, and education to be some of the concerning factors creating the large gaps within our community make up. As the DEI coordinator, the objective is to explore these identified areas and determine how DSF can not only overcome the disconnect that may exist or how we can partner with community providers to ensure that they are aware of the resources, information, and/or support that DSF has available. We recognize that medical providers cannot guide their patients to us for assistance if they themselves are not aware of our foundation or what we can offer to both the patient and the staff in regards to training and research tools.
Equity can also present itself as social acceptance of a Dravet Warrior whether it be in a community setting, school setting, work setting, or within our own families. Dravet syndrome is mostly known for being a rare disease that causes difficult to control seizures. Although epilepsy seems to be a well-known condition, once you begin the journey of caring for someone with Dravet syndrome, it quickly becomes clear that the community is not always ‘seizure friendly’. For example, when our warriors become school age it can be difficult to ensure that the child is able to receive the attention, support and care to ensure their physical safety during a seizure or the delivery of rescue meds. Then there the comorbid conditions that come with the diagnosis such as cognitive delays, behavioral concerns, or Gait/motor skill impairments. Children with Dravet syndrome may need mobility assistance devices and determining how to obtain these items or introduce them into your family setting may feel foreign if you have not previously had to deal with a similar situation as a caregiver. The same may apply to interactions amongst other children with your Dravet warrior. DSF acknowledges that siblings can be affected by the changes that come with caring for a loved with Dravet which is why to maintain sibling resources with our Sibling Kits or during our Sibling Camps offered at our Dravet in-person educational events, such as Day of Dravet and our biennial conference.
If we provided a football stadium full of people an opportunity to identify an inequity they have seen or experienced, I am sure that many stories would be different in terms of it being racial, financial, physical, cognitive, or even culturally based. Although we can study history and know that there is no ‘quick fix’ to creating overall equality, as DEI Coordinator we are focused on taking things one step at a time to fight for a change, break the barriers, and eliminate stereotypes that affect our families and communities. Addressing equity provides a foundation to allow DSF to strengthen our bonds and expand our reach by being transparent with the obstacles we may be experiencing while trying to spread awareness. DSF is Community, Research, & Progress. Nothing worth fighting for comes easy, and we will never stop fighting to make sure our loved ones and families obtain the proper support, care, and treatment to provide true quality of life.
Please stay tuned for our next publication where we will discuss the next letter of the DEI acronym: I for Inclusion
Should you have any questions, suggestions or concerns, please feel free to contact me at: Tatiana@Dravetfoundation.org