In some way or form I have been an advocate my entire life. Coming from a family loaded of people with various types of disabilities I consider myself savvy to the concerns and needs of the community.
Most importantly I was raised by a mother with cerebral palsy. She has both physical and cognitive impairment. And despite all her challenges, she was able to raise strong, independent and disabled children.
Because my mother has a speech impediment, I was a witness to her pain and frustration in trying to communicate with people. Especially doctors when she took me to my appointments. As I got older, I became her little protector and made sure they listened to her. I wanted them to know she is my mother and what she has to say is important.
Of course, being a person with a disability there is hardly ever a moment when you are not advocating for yourself. But when I became Ms. Wheelchair New York it got my wheels through other doors to advocate for more than just me and my family. My platform was on children with disabilities, specifically in the educational system. I played a role in raising three disabled children and saw the challenges that they were facing. Including not being allowed to participate in recess or field trips. This was extremely frustrating to me and of course the kids. I remember growing up in a time where liability did not stop me from playing with my peers. And I wanted to be the voice that being physically present in the classroom was not enough.
As a result, I went to schools, after school programs, started my own mentoring program for people with disabilities, I ran groups for parents of children with disabilities to teach them how to advocate for their child affectively. I taught them how to use the IEP to their benefit and that you do not have to take no for an answer.
A year ago today (6/18) I started working at BCID. The truth is the opportunity to work there kept coming my way and I turned it down several times because of fear of losing my services and all the “what if’s”. And then I thought, fear does not own me, and I can’t be an effective advocate if I don’t get my own wheels wet. I did my research to make sure that I could secure my housing, my insurance, and my home care without the fear of loosing it all. Something else I now advocate for.
Here we are a year later, and I love what I do. I love going to Albany. I love joining protests and rallies and going to court to support and be a voice for my community. And although it’s extremely frustrating because you would think in the year 2020, we would no longer have to fight. But I am glad I have the guts to fight. I appreciate the people who paved the way for the civil rights of people with disabilities. And I know the job is far from done.
In the year of Covid we can see how easy it is to accommodate people to work from home. Although Covid has been difficult and taking lives of people I know, it has open doors to other avenues of advocacy for people with disabilities in the workforce.
During Black Lives Matter, I have been able to participate with my black and brown brothers and sisters in protests, marches and visuals. Something I think being a lifelong advocate has prepared me for. On Monday I spoke about Black Disabled Lives and how the Black Panthers came together in unity with the protesters at the HEW building years ago, with joy in my heart.
My most passionate part of advocacy is for CDPA. It all comes back to my mother. Years ago, when she had me and my brother one of the stipulations of her being “allowed” to raise two children with disabilities was to get home care. And because of CDPA my mother was able to raise two children with disabilities. My mother’s home attendant of 36 years just recently retired last year. She is much more than a home attendant; she is my other mother. She saved us from being placed into a home. Into a system that probably would not know how to care for us. She saved our lives and graciously allowed my mother to care through the help of her hands.
My partner who is a quadriplegic is educated, lives in his own home, drive his own vehicle, and is educated. But because of his quadriplegia he would be in a nursing home if it were not for CDPA. He requires bowel and bladder techniques and care. Which traditional home care agencies do not allow. To think something as simple as going to the bathroom that most people take for granted is a defining decision if he should be in a nursing home or not. This angers my soul. I know I am preaching to the choir but I think I bring a lot of passion, fearlessness and most importantly a big mouth, and would love to participate at the table with all the other passionate people.