I was raised to stand up for myself no matter what. At home and in school, my mother encouraged me to never back down when anyone said, “not you, you can’t”. As a kid it was a matter of feminism and ethnicity. After I injured my spinal cord at age 14, I did not accept the prognosis. I am a C-6 Quadriplegic but I am more than my disability. I didn't know how much I could recover in mobility and sensation and not one doctor could state with any certainty how far my body could go. Having had that constant affirmation from my mother that I could be anything I wanted, do anything I set my mind to, I stayed optimistic in my recovery and in my life's goals.
While undergoing in-patient physical therapy, I found out that the private high school I had applied for and been accepted into, did not want me to attend because I used a wheelchair. To make matters worse, the school did not want to refund my tuition. I felt so betrayed and angry but I couldn't do anything about it. My mother advocated on my behalf and threatened to sue as well as go to the press. The school reversed their decision and I started my studies as an in-patient and attended that school after being discharged. What the new Principal tried to do was wrong and I knew it but I couldn't fight. I felt helpless and promised myself I would never let myself feel that way again. There was no ADA then but there were, I believed, sufficient laws to prevent discrimination and to protect an individual from having their funds taken when they were faced with a personal hardship.
I was proud of my mom and I better understood what she had been trying to teach me. I graduated and went onto college, out of State so that I could learn to be independent. My University was new and was designed to be barrier-free and all inclusive. The experience was empowering and I felt invigorated as I moved forward with my studies and career. My wheelchair didn't matter. My mind was sharp and I felt equal to my peers.
Like many college graduates, my career choices took twists and turns but always moved forward. I did not have a Constitutional Amendment to protect me; just my belief in ethics and justice. I found numerous ways to maneuver over, under, around and through the obstacles set in my path. On occasion, I had to assert my rights as a woman, a minority, or a person with a disability but I’ve always resented the need. The fact I am a human being, a natural born citizen of the United States should be enough. What is right and fair should be the standard by which we live but it's not.
Now, over 25 years since the passage of the ADA and it seems my struggle for equality is harder and continually under threat. I'm tired of it but I stand and fight. Healthcare coverage is continuously facing cutbacks and while I align myself with organizations to fight, I stand alone on the everyday nonsense that affects the quality of my life, my ability to work and keep or invest my earnings and keep my home based services. I never know, week to week, month to month what kind of trickery insurance companies will engage in and what foolhardy legislation elected officials will support.
I moved from New York to Arizona and found myself in the crux of a socio-political paradigm shift. People care here and Organizations fight and win for the greater good of the many but again, when the arrow points to me and a part of my life, my right, is being denied for no valid reason than the perception that alone, as an individual, I am small, helpless and without resource or recourse, I stand and fight. I may fail because I am facing a Goliath in a self-serving climate of greed in an Industry that has a strong hold in our Legislatures, but I stand and I fight. I remember that moment of helplessness and my vow; never again. I remember my mother’s fortitude and I rise up. I recall a quote from a sage voice telling me, no one can disrespect you without your consent and I am relentless.
The State of Arizona decided that I was a resident the day I arrived and my Homecare services, medications, medical supplies and physicians visits were covered retro-actively by whichever Provider I chose to manage my healthcare. All out-of-pocket expenses were to be reimbursed. My Provider felt otherwise but after a year of grievance complaints, denial appeals and a Hearing, my voice won out. Every cent owed to me was returned. I won. The check arrived a bit short and I brought it to the attention of my Provider; a second check was issued for the difference and I even recently an apology. It was at that moment I found peace. For me, each battle was not one of monetary enrichment but of principle. I would not let an Industry dismiss me or try to belittle me as a person. I am person with rights and self-worth. I did not allow them to disrespect me. I did not and will not give my consent and it is for that reason I fought and won. I am who I set out to be; an advocate for justice!