Monday, October 7, 2019

Fired Up

Have you ever spent a weekend trying to sort out all the information thrown out at you regarding something that you have become so passionate about you almost stand still, like a deer in headlights?

I'm there but internally, I am fired up beyond belief.

This year, I have the privilege to sit in a room of individuals both family advocates and self advocates and participate in a program called Partners in Policymaking. This program, offered by Rutgers through The Boggs Center on Developmental Disabilities has left me sitting fired up without a clear path on where to begin. That being said, I am certain the individuals I am sitting by will have my back focused on their own areas of change that they hope to make.

The first month, I spent moments crying, revisiting the diagnosis, the life and the struggles that we face raising a child we only want to have the same opportunities as others. This month however I sit here strategically emailing, writing and calling individuals who can help me to make a change, for my child, myself and those who come after us.

I still remember the shock I had when I learned we had no insurance benefits for our disabled child, and I struggle still to get her qualified under New Jersey Performcare, trying to prove my child is disabled enough to receive help, from the state. I think about what I didn't know, four years ago, and also about what I do now and I celebrate the gift that autism has brought into my life.

This month, I am focusing on my project for Partners. I have so much swirling in my mind I almost struggle to get it out. I see the change I hope for my child and those behind me but feel as if I am trudging uphill trying to push so much out of my way. I am learning, about myself, about others and how to be a better wife, mother, friend and human being. Gosh, what I never imagined autism would bring to me.

This weekend however I dreaded our Sunday session. Honestly, I get overwhelmed with academics, long power point presentations and deciphering laws that will potentially impact me and those that I love. However what I was met with yesterday got me more fired up than my own journey, our journey to fight for Exxon Mobil to cover autism. I want to shout it from the rooftops and say so much but also dread stepping on toes, hurting feelings or even rubbing people the wrong way.

Sometimes choosing to do what is right means taking a road that may have bumps along the way but realizing that perhaps I can make a change that will help someone else who walks a parallel path with myself.

Yesterday, I had the honor of being in the presence of an attorney from the Center for Public Representation. As she spoke, I realized that there is no party affiliation when it comes to Civil Rights. I also realized from her talk that Disability Rights are Civil Rights. Those who are disabled are treated in ways that we abolished years ago for others who were different genders and races and we are now watching as individuals are fighting for those same rights that they are not guaranteed because they were born different.

I learned that New Jersey is the second worst state in the Nation for inclusion. My child is here and while a recent post picked up by Yahoo garnered much chatter about my selfish ways, are we not humans wanting the same for our children and adults with disabilities as we are for our children and peers without? It has been years since Olmstead v. L.C. was passed and still we segregate our children and allow parents of typically abled children to dismiss our children from being included. In school. In sports. In experiences that we all dream of for our families.

I sat and watched, tearfully, with a pit in my stomach about the disgrace of our nation and what truly happened behind closed doors of institutions crushed by the PBS Documentary, "I Go Home: The Story of Pennhurst". We cannot change what we didn't know but we can in fact make institutionalization the exception, not the norm and when individuals are institutionalized allow them to make their own choices, as they too are humans. I am grateful for Judge Broadhurst taking what he saw and choosing to make sure individuals are allowed to live in the community and work towards living their best life. Still today, New Jersey is one of the most institutionalized states. Why? As one of the wealthiest should we not have the best supports and care?

Finally, I listened and learned about a rule passed in 2014 that may directly affect my own family one day. The CMS' HCBS Settings Rule currently on its way to needing full compliance to receive federal funding, allowing those living in places with government funding to have a voice, for themselves, to make choices, to plan their future, not to be treated as lesser or unwanted because they were born disabled. Still, New Jersey falls behind, in planning sitting as one of only a few states without transparency and a transition plan that is being shared widely with both family advocates and self advocates to share ways that they want this rule to impact them.

Why? Why am I fired up? New Jersey is my home and by the looks of it, we need change. Not just in schools or in communities, we need change in hearts and in minds. We need as a human race to value these individuals who share our roads, visit our churches, shop at our stores and attend school with our children to truly be seen as enough.

Years ago, my biological sister sat with me, I lamented that I was not the right person for Seraphina, to raise a child with a severe disability but she told me I was chosen for her because I was enough. Reality is, we are all enough. We all have value, worth and are deserving to live a life that we choose, that we enjoy and that we look back on with fond memories.

My call to you, my readers, my friends, my neighbors is to begin sharing, to spread the word that those who are disabled, mentally, physically or emotionally are as valuable as those who live typical lives. Together, we can choose to be fired up and often when people are fired up, there is change and I believe we can make great change.

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