I had the honor of going to the White House for the first forum on LGBT and Disability Issues. It was one of the most inspiring, empowering events I’ve attended. I did wish there was more time to discuss issues pertinent to our communities, but the great thing about this forum is that it’s opened up the channels of discussion.
One of my questions was for Dr. Matt Heinz, Director of Patient and LGBT Outreach at the Department of Health and Human Services. His work deals with encouraging independence and self-sustainability. I wanted to know what was being done to address a very important issue that may limit the freedom of people with disabilities using PCA care paid for by government programs, especially trans-identified people with disabilities who are at risk of injury from hatred and bigotry.
Before I address the issue, let me tell you a story. I came out to my family at 16, and was immediately told not to tell anyone else. They would hate me. I went to BGSU for my freshman year, because BVR paid for my attendant care. I hired two girls who lived in my building to help me with ADLs (activities of daily living). I wasn’t out to these two girls.
They learned that I dated women, from their sorority sister. She lived on the same floor as some of my gay friends. I had no idea she even knew them, and never came out to her. She nonchalantly mentioned I was “that gay chick in a wheelchair” when she found out they worked for me. One PCA was livid. As a Christian, I was an abomination.
The next time she put me in bed, she waited until I was out of my wheelchair, and angrily confronted me. She asked me if I liked women. I sighed and said yes. She was very angry and I was unable to defend myself. I was lucky she did not become violent. She told me I was disgusting, and thought I needed help. She then told me she could not work for me. Her roommate quit, too. I had two weeks to find a replacement.
The Internet was still in its infancy, so there was no Craigslist. It was hard to find anyone in such a short time. I lived in fear every time she worked for me. I was always lectured and treated poorly. I found someone to take over care, but she never showed up. I was trapped in bed all day. P (the woman who gave birth to me) had to help me. She demanded I come home. I tearfully packed up, to return to an abusive home. It was during this time that I tried to kill myself. I knew I had to get out or I would end up dead.
I’m telling you this because being outed to PCAs is dangerous. No LGBT person should ever be outed. It is a risk to our health and safety. We could end up hurt or dead.
I digress. There is something called the companion care exemption. It is a part of the Fair Labor Standards Act (FLSA), but as of January 2015, the exemption will be removed. It allows personal care attendants to work for over 40 hours a week. The majority of my friends with disabilities have one PCA that does the majority of their care. I have a PCA like that. She has worked for me for 12 years, and knows my body. She has been with me during my entire transition. She would never harm me.
States do not have the money to pay PCAs overtime. Many work twice the amount of hours. They don’t care about getting overtime. They will soon be allowed just 40 hours, because the government program they work through will not allow them to take more hours. It will put many people with disabilities in very precarious situations, but it could be even more devastating and harmful to trans-identified people with disabilities.
My question would have been what, if anything, can the DHHS do to help people with disabilities, especially those in the LGBT community, address this blatant threat to their independence and self-sustainability?
I have 56 hours of care that involve me being naked. My body is full of scars. Looking at me naked, you know I’m transgender. You cannot tell, if I am clothed. My current PCA would only be allowed to do 40 of those 56 hours. That means I would have to find someone new to do 16 hours of my care where I am naked. They would have to look at my body, against my will. I would automatically be outed to them. I would have no choice in the matter. Contrary to popular belief, I am not out to everyone. I do not hide who I am, but for my own safety, I pick and choose when and who to to tell. I have excessive anxiety at the thought of allowing someone else to see me naked.
These agencies will limit the hours these PCAs have. Many of them will lose over half of their current income. They will most likely have to get second jobs, which may limit their hours even more. My current PCA cannot afford to lose half her hours. She won’t be able to afford her medical care or bills.
I know that if this is happening to me, it is happening to others. We need to address this issue, now. It is going to greatly harm the greater disability community. Together, we need to address this issue because our independence, safety, and right to self-sustainability is greatly threatened!
My friend has started a petition addressing this issue. Please sign it, share it, and share this article with EVERYONE!!