I am person with disabilities, use a power wheelchair, been eligible for Medicaid since age 20 (now 41), spent many years over 400 pounds, have 4 college degrees, blessed with a supportive family, and otherwise cursed beyond belief. My disability for many years was labeled BEING FAT when I lost most of the weight the medical community decided to investigate further and attempt to explain why my health got worse instead of better. Over the years I have been diagnosed with CIPD (Chronic Inflammatory Demyelinating Polyneuropathy) Scheuremanns spinal disease, osteopenia, arthritis, in and out of bouts of diabetes and hypertension -- bottom line I am in horrific pain 24/7. I treated it most of my life with self-hypnosis and biofeedback. Over the last few years I have had to take increasing amounts of morphine and I am scheduled for a morphine pump this month.
Of any challenge I have faced, the worst has been the accepted lower-class treatment of people with disabilities, especially children and their families. Being disabled seems to be considered to mean the same as poor, ignorant, waste of resources, and ungrateful -- forever LABELED less than everyone else.
This is likely the consequence of being labeled DISABLED or not -able. We are the only minority defined by what we are not. Image filling out an application and having to check the categories "not-male", not-black", not-skinny...but the truth is that is we are a group of people that with a long life each individual is guaranteed membership. In our alleged enlightened, free country we are not a lower class but instead a lesser-class. I want this problem addressed and a good first step is a better category name -- currently I am leaning g towards "GIMP"
Over the years I have met my responsibilities and attempted to be a contributing part of the community. I have been employed as a professional educator and psychologist. What I discovered working in the publics schools (3 states) was a public system with no expectations for children with disabilities, a complete disrespect for their skills, abilities, ideas, and plans for the future. The district routinely retaliated against families and employees who attempted to advocate for this protected population. As a result of my efforts and never-quit attitude I have been through the horror of our judicial system and the uncaring of our state and federal representatives.
Call me a fool, Don Quixote, or pro se ADA litigant… The fight is largely futile, still I try, and I hope someday to find someone who cares and is willing to help…hasn't happened yet.
The decision to be a pro se litigant is an experience that affirms the futility and unwelcome actions of citizens with disabilities. The courts and opposing counsel presume and treat you like a convicted felon. They assume you have nothing better to do but sit around in your wheelchair and whine about your institutionalized/sickly/sad life.
I have personally worked the process and lost at summary judgment because the EEOC gave me the wrong papers and when I gave the court the right papers they concluded that I manufactured them. The EEOC (Director Zurita – Tampa) called me recently and told me that the reason I lost is because I was too lazy to do the job right AND that NO ONE can make him or his office correct their mistake!!! I have tried lawyers, congressman and senators. No One CARES!!!
In my case the judge concluded that as an employee of the Hillsborough County School Board I had to exhaust administrative remedies (I understood that was required only for Federal Employees) for my charges under the Rehab Act and that I did not file ANY retaliation under the ADA. The fact is I filed a timely EEOC charge twice!!
I have concrete proof, certified deposition testimony, photographs, and copies of state reports…all proving that I did my job and that the school board violated my rights and the rights of children and staff with disabilities. The school board responded to my protected advocacy activities by removing wheelchair access, interfering with my case in another state, took away my healthcare, blocked my access to professional licensure AND had me investigated for two years for criminal prosecution by the state department of insurance. They told the state that I am NOT REALLY physically disabled and ACTUALLY developmentally-mentally impaired PRETENDING to be physically disabled.
The school board of Hillsborough County made copies of other employees SS numbers (25+)and several children's psych reports and put them in an 800 page packet (distributed to anyone who asked – AVAILABLE WITHOUT SUBPOENA). I have copies of everything I describe. This is only the short list of despicable and illegal activities of the school board of Hillsborough County Florida.
My case was closed at the Eleventh Circuit because I was homebound and begged (via motion) to file electronically. This motion was denied and when my brief arrived a week late with letters from physicians, and the airline that destroyed my wheelchair in a recent flight to California. The court denied any reconsideration and affirmed the lower courts errors because I failed to prosecute.
I contacted Health and Human services, US DOJ, Washington EEOC, Senators Martinez and Nelson, lawyers from DC to California. I even wrote to TV News networks. I now have 3 weeks to petition the Supreme Court.
ANOTHER EXAMPLE OF DEPLETED RIGHTS FOR PEOPLE WITH DISABILITIES
Recently I found out that the state of Florida does not recognize another disability law (Special Needs Trusts) and that the official position of the DCF (Dept of Child/Family) is that people with disabilities who have any income above $756/single must either be institutionalized or in a hospice to access Medicaid. I went through a hearing and had their position affirmed by their highest office. I am in the process of appeal as a pro se (the advocacy center turned me down 5 hours before the filing deadline). The local DCF offices never heard of Special Needs Trusts and flatly told me they do not exist. Federal law 42 USC 1396p outlines the existence of this law since 1993!! None-the-less off again I must go into another court without support.
All I wanted was healthcare so that I can be permitted to receive the life-sustaining treatments I need. I want to work in field where I can help people with disabilities access the resources they need.Instead I am in a never-ending health crisis, a patient at a local cancer center, have bone, muscle, neurological disorders, and live daily with extreme pain. The opposing counsels enjoys keeping under fire and spent thousands upon thousands of dollars to keep me away from treatment and prospective employment.
I am so overwhelmed by the complete lack of consideration of the rights of people with disabilities. Florida's advocacy center has always turned me away. I have found this is the common experience for basically everyone. The usual excuse is that the advocacy center does not understand disability law and therefore cannot assist in matters effecting Floridians with disabilities. The EEOC told me this is because I am too smart and that my employer hated me for being ethical. If I would have agreed to place poor minority kids in special education and occasionally falsify a psychological test result I could have kept my job.
If anyone knows of anyone who is disabled, educated, and interested in doing the right thing THEY SHOULD BE WARNED. Apparently our US Constitution has an unwritten provision that states that all the rights/opportunities/protections described in that document are predicated on either being a lawyer or represented by one.
I have not given up and continue to look for assistance. My choice at this point is to keep fighting or curl-up and die. This is a fight far from over – the ADA in my experience has been a failure. The Rehab Act has loopholes big as barn doors (my favorite – if they discriminated for any other reason besides disability, well then, as a matter of law YOU LOSE!!)
I hope others find the success I have not found. Any suggestions??? Please feel free to contact me. I suppose I should just curl-up and die but what can be expected from a member of the "Not-able" class/culture/minority