Berthy De La Rosa-Aponte is a 30-plus-year south Florida disability advocate and former chair of the Ticket to Work and Work Incentives Advisory Panel, but she prefers to be known as Lucy’s mom. She is known for her advocacy of the principles of self-determination as a way to get beyond the stigma associated with developmental disabilities and to secure understanding, opportunity and recognition for individuals like her daughter, Lucy (Luz E. Aponte). For Developmental Disabilities Awareness Month, myDFI.org interviewed De La Rosa-Aponte to talk about her life’s work and what this month means to her and her family.
Below are some of the insights she shared with us about developmental disabilities, the role of self-determination in spreading awareness, and what we all can do to address stigma.
An interview with Berthy De La Rosa-Aponte; March 31, 2015
myDFI: What is important for people to understand about developmental disabilities?
Berthy De La Rosa-Aponte: Developmental disabilities is a broad term, an umbrella term, that includes intellectual disability but also other disabilities apparent during childhood. These disabilities can be cognitive or physical, or both, appearing before the age of 22, and likely are to be lifelong. Some developmental disabilities are largely physical, such as cerebral palsy or epilepsy, whereas intellectual disability is mostly cognitive. Some individuals may have a condition that includes a physical and intellectual disability, such as Down syndrome.
Whatever the nature of a disability, though, we need to see people with developmental disabilities as equal citizens. Even though they may have disabilities that are more noticeable, they want to participate, they want to live in the community, they want to have a job, they have dreams that they want to pursue. They deserve the same dignity of experiencing life to its fullest.
myDFI: Why is Developmental Disabilities Awareness Month so important?
De La Rosa-Aponte: This is a time to celebrate the accomplishments of people with developmental disabilities, as well as to educate and advocate for greater awareness. Some without awareness make life or death decisions for individuals with developmental disabilities – from doctors, nurses and other health care clinicians, to lawyers, judges and politicians.
When my daughter, Lucy, who has cerebral palsy, intellectual disabilities and autism, was in middle school, I would go into her classroom before she did the first couple of days. I would say to her peers:
‘Lucy is going to come to your class. She has a disability. We are all different in many ways, but we all have dreams and we all have feelings. One day when you grow up, you are going to be the doctors, lawyers, politicians of our community. By you knowing Lucy, you are going to be able to understand better and help other people with disabilities that you will encounter in your lives. One day, you never know, you may have a loved one with a disability or have one yourself, and you will understand and cope with it better.’
This same message is important to adults as it is to students, and during Developmental Disability Awareness Month – and all year long – as it was in those mornings, for those middle schoolers, before first bell.
myDFI: Let’s talk about your daughter, Luz (Lucy) E. Aponte. How has she influenced you and your family’s involvement in disability issues?
De La Rosa-Aponte: The word luz in Spanish means ‘light.’ That is exactly what she has been – not only to me and my family, but also to others that get to know her – enabling them to see beyond. Lucy has inspired us, her family, to get involved in disability issues and serves as an advocate herself.
Never did we know when she was born, born with her challenges, that her name would be so powerful. She has been our light. Every day she lives up to her birth name. It is because of her that I have done what I could, have served on these committees; it is all because of Lucy.
myDFI: How would you encourage others to get and stay involved, to spread awareness?
De La Rosa-Aponte: We need to learn and practice the four principles of self-determination:
- The first, and core principle, is freedom – freedom to exercise the same rights as other citizens guaranteed under our Constitution, to establish where we want to live, to live with whom and how we please, to plan our own lives. People with developmental disabilities are entitled to these freedoms. That is the core of the principles of self-determination. In addition, there are three other principles: authority… over your resources; support… for building a life in your community; and, responsibility… to give back to your community.
- Authority goes hand-in-hand with the first principle. A basic output of freedom is having the control of whatever money or other resources we need for our own support. Spending money our way is important to being able to be in control, to make our own decisions, and be able to not just have dreams and goals, but to go after them.
- Support – everyone needs supports and services. Some are formal supports (paid), others informal (non-paid). We all are interdependent. Some people pay others to cut their lawn; others need a little bit more (from informal to formal supports). If we learn and internalize those, we can have a better society where we recognize that we all – whether we do or do not have a disability – need some kind of support to build and keep our lives.
- Responsibility I consider nearly as crucial as the first principle (freedom). At the same time that we all want and deserve freedom, we need to be responsible for that freedom. That means we have to register to vote, go to school, work and contribute to society. We have to do our part to ensure that freedom and sustain it.
A friend to Lucy, and to our family, understood these four principles and acted on them as governor, establishing a state agency dedicated to individuals with disabilities. That agency did good things, made important changes, because he took these principles into his head and his heart; he even mentioned self-determination in his first State of the State address as governor. The conversation in Florida before was only about aging; not anymore. His awareness changed disability issues in Florida. It gave us a seat at the table and a place on the agenda.
In this way, these principles spread awareness, but they also address stigma and promote stronger communities overall.
myDFI: What one thing would you encourage individuals without disabilities to do to help spread awareness?
De La Rosa-Aponte: Treat people with developmental disabilities with dignity and respect, just as you would want to be treated. This is the foundation of the four principles of self-determination.
myDFI: What one thing would you discourage?
De La Rosa-Aponte: Do not use ‘care’ when referring to supporting someone with a disability. Vocabulary entails action. Words have meaning.
Whatever the nature of a disability, it is important for people to understand individuals with developmental disabilities are not sick. There is stigma and a lot of misunderstanding. If you are supporting someone with a disability, you are supporting him or her to be the best person he or she can, and he or she will be. If you are taking care of someone who is not sick, you really are limiting him or her. You need to support them to be the best they can be – whatever that is – not take care of them. It is very simple, but an important distinction.
myDFI: Anything else you would like to share?
De La Rosa-Aponte: Lucy, 33, has a wonderful dad, Milton Aponte, and two wonderful siblings, Milton II and Diana, and the most wonderful support team. She has people that have worked with her for 16 years and have supported her to have the life she wants. It is important to honor those people that support people with developmental disabilities. We are forever grateful to them and thank God for their presence in our family.
Berthy De La Rosa-Aponte, mother to Lucy, has been a disability advocate for more than 30 years with service on numerous local, state and national boards through gubernatorial, congressional and presidential appointments, including the Ticket to Work and Work Incentives Advisory Panel and the President’s Committee for People with Intellectual Disabilities. De La Rosa-Aponte also is a member of the National Advisory Board (NAB) on Improving Health Care Services for Seniors and People with Disabilities. Learn more about the NAB at www.myDFI.org.
A note from the myDFI.org team: March is Developmental Disabilities Awareness Month. As the Studio blog suggests, “make somebody aware of your Something [that makes you different]” and build awareness every day, all year long.