White House Question

Hello Friends,

Hope you guys are having a great day. You guys will be seeing this the day after I have spoken at the White House in Washington DC. Yes, the Little old man got to speak at  1600 Pennsylvania. As part of a panel celebrating the 25th anniversary of the Olmstead decision. Avenue! Glory be to God. Here are the two questions I was asked and my responses. You will find the link to the entire event HERE

‭Colossians 4:6 NIV‬ [6] Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone. 

Question 1

1. [All – 2 minutes/panelist]: Thank you all for being here. I’d like to begin today’s discussion with a two-fold question. Can each of you talk about your journey: what barriers have you encountered throughout your life and how has that shaped you as an advocate today?

Thank you Anna and thank you to the Biden-Harris administration for this opportunity to mark the 25th Anniversary of the Olmstead Decision. There is a saying in the disability community, “If you know one person with a disability, then you ONLY know one person with the disability”. Like a few of my fellow panelists today I was diagnosed at birth with Cerebral Palsy (CP.) If you examine our day-to-day lives you will find some similarities. We use wheelchairs. We all came here with our Direct Support Professionals (DSP). We need help with transfers, bathing, and other daily tasks. Those are the kinds of things people imagine when they think of those with disabilities. Some people believe that we are helpless. I began my advocacy journey because I wanted to change misconceptions. Ladies and gentlemen, I am Puerto Rican. I immigrated here with my family in 1991. You may be thinking of the same story “We came here for a better life.”  My story comes with a bit of a twist, my twin brother Abner and I live with the same diagnosis. As with most twins, we are opposite, I am right-side dominant and he is left-side dominant. We both have different personalities, different goals, and most importantly, different needs. 

As I got older, I had to balance the big picture and what obstacles were directly in front of us. Every day presents its share of obstacles, that’s what the mission is. That is the duty of a disability advocate to face each day and push through the challenges in hopes that you are paving a smoother road for someone else. 

Getting active and involved as a self-advocate has been a game-changer for me.  I currently serve as the Vice Chair of the New Jersey Council on Developmental Disabilities (NJCDD) and the chair of our Council’s Grants Committee. This is another opportunity for paving the road ahead. 

We must keep in mind that according to the Centers for Disease Control (CDC), one in four Americans is diagnosed with at least one disability. That is a quarter of the population.  We are your neighbors, we are your family, we are your friends.  Our opinions matter, our stories matter, and our voices matter.  Ultimately, I became an advocate because I was tired of seeing people I know feel stuck and isolated because they didn’t have a chance to be heard. I traveled here today to be heard and I appreciate your listening.

Question 2

[Kevin Nuñez – 4 minutes each]: For people with disabilities watching this live stream, the idea of being a disability advocate can be a little intimidating. How did you get started in advocacy? What closing words of advice can you offer?

  • Kevin will talk about his advocacy through the New Jersey Developmental Disabilities Council, and the power that people with disabilities and other allies can have by working together to challenge ableism, hold elected officials at every level of government accountable, and advocate for budgets and policies that advance the rights of the community. 

As a person with a disability, there are certain aspects of life I have to accept. I cannot get out of bed alone unless someone physically gets me out of bed. I know there are many things in my life I cannot do for myself. The term “learned helplessness” is real. Thankfully I found my way to learn how to help myself and others by writing a book, hosting a blog, and in my role as Vice Chair of the New Jersey Council on Developmental Disabilities.  At NJCDD, we are paving the way with advocacy, systems change, and capacity-building activities.  There are many examples to share, but I will focus on a few that have had an impact on meeting our Council’s goals and challenging ableism.

Six years ago, NJCDD funded a project to educate state officials and the NJ legislature about the significant role and responsibilities of Direct Support Professionals (DSPs).  Providing education about DSP’s critical job functions paved the way for DSP recognition and the legislature included direct support professional wage increases in the state’s budget for the past six years. As a Council, we advocated, changed perspectives about the vital work of DSPs, and lifted some of the societal biases and discrimination against people with disabilities in the process.  

Just before the COVID-19 pandemic that shuttered the disability community and locked most of us in our homes, the Council spearheaded and launched a bipartisan NJ Legislative Disability Caucus along with almost 40 members of our Senate and Assembly and an additional 45 supporting organizations.  The main goal of the Caucus is that lawmakers form relationships with the people impacted by their work and consider the needs of people with disabilities before making laws. We were successful as a state in extending school for up to three years for graduating special education students who could not meet their educational goals due to COVID-19.  Legislative Caucus members heard us and passed a bill allowing students to extend their educational entitlements.  Around the same time, I participated in interviews and met with members of the legislature to address my experiences as a student with disabilities and the lack of proper planning to have me safely evacuate during school emergencies.  Well, I can tell you today that because of advocacy and educating lawmakers, our state has a law that now requires school district emergency planning to better ensure the safety and security of students with disabilities. 

Today we commemorate the 25th Anniversary of The Olmstead Decision.  Two women used their experiences and voices to make a difference for others before judges and lawyers. 

We must help each other and pave the way. 

In closing, don’t live in fear because of your disability… find your abilities. Get involved with your Council on Developmental Disabilities because years ago, someone took a chance on a kid who had given up on college. Now, I sit here today in the White House! It is time for others to make a difference for the next generation.  Don’t just sit at the table where the decisions are made but lead the discussion. Dream big and be great. Don’t be afraid!  Never give up!

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