For those of us with physical disabilities, if we need help doing activities of daily living (ADLs), we must rely on others to help us be independent and self-sufficient. Some of us have nurses. Others rely on PCAs (personal-care attendants) or even family members to help us with things like getting out of bed, washing our hair, brushing our teeth, and cooking our meals. While it may seem daunting to some to be reliant on another human being in order to function each day, for many of us it’s just another part of our daily routine. One thing I think many of us do not consider is what we should do if the person we rely on turns out to be harmful or abusive. It happens more than you might think.
For me, I like to think of my PCAs as just another part of the technology I need to be a self-sufficient functional part of society. With PCAs, as well as actual technology like my power wheelchair, I am capable of doing amazing things. I am a filmmaker who studied film in one of the most physically demanding film programs in the country. I am the first person with a severe physical disability to make it as far through the program as I did. Now that I am out of school, and I am a working filmmaker I depend on others to move my body, my film equipment, and all of the other physical needs I have, so that I can focus on being a great film director.
Finding the right people to be a part of your team isn’t always easy. I have gone through many different PCAs, and not all of them have been willing to help me. It is a delicate balance. You want to find people that you trust, but you also want to find people that you care about. Many of the people that have worked for me luckily, have become a part of my family. But not all of them have had my best interest in mind.
Full disclosure here: I am also a transgender man. This means I was assigned a female gender label at birth, though my gender identity is actually male. I have spent the past 12 1/2 years transitioning to make my outer appearance reflect on what I believe I am supposed to look like. That adds another layer to my journey as a disabled person hiring people to take care of me in the most intimate of ways. We have come a long way, as a society, since the late 90s when I was first beginning my journey on the path to independence. This is especially true when it comes to LGBTQ rights and acceptance. Unfortunately, I always have to consider being a trans man when I’m hiring someone new, especially for my own safety and protection.
I have a complicated history in terms of not only self-acceptance, but having others accept me, as well. Some of my family turned their backs on me, and I’ve lost many friends. I remind myself that this is a small price to pay, in order to be happy with myself. No one should ever make you feel like you are not good enough, like you deserve less, or like you are disgusting. I struggle with self-doubt. I struggle with believing I’m a good person. I accept myself as I am, but the oppression I face from society can be overwhelming. I know that I have to have a team around me that accepts me and supports me, but unfortunately, I found this out the hard way.
Going to college and living on campus was a huge stepping-stone for me. I have Spinal Muscular Atrophy, a degenerative muscle disease, which is progressive. I went into a wheelchair full-time when I was 16, and unfortunately I had no comprehension of the independent living movement, at the time. I was relying on my family for all of my care. I also came out at the same age, a few months after I stopped walking. I had always been attracted to women, but growing up in a small conservative town in northwest Ohio, I never really knew anybody in the LGBTQ community. Having my first gay friend made me think a lot about myself, and what gender I was attracted to, but I didn’t really understand that I was transgender not gay. All I knew was that I was attracted to women, so that made me a lesbian, right?
Coming out to my family was a horrible experience. My mother was not accepting. My father didn’t understand, but he eventually came around, before he died when I was 20. I had a tumultuous relationship with my mother, so escaping to college was the best thing that could happen to me. I was able to hire personal-care attendants thanks to funding from the Bureau of Vocational Rehabilitation. I hired two women, one who was a nursing major, and the other was her roommate. Like me, she was in the arts, studying music.
At first, everything seemed to go well. We all got along, and I was coming out of my shell thanks to the LGBT group on campus. I was still in the closet to both of my PCAs, because I was afraid to tell anyone. The words of my mother telling me that everyone would hate me if they knew kept echoing in my head. Unfortunately, I did not have to tell them. It was late October or early November when they confronted me, saying they knew the truth. Someone had told them my secret!
The nursing student told me she was a Christian, and that she didn’t agree with my “lifestyle.” Her roommate, who was from Chicago, said she did not mind LGBT people, but like her roommate, she decided she would stop working for me. Together, they would give me until the end of the semester to find replacements. I felt such a huge amount of shame, because my mother was right. People did hate me because of who I was.
The next month was torture. I had been outed to them by someone in their sorority. During a movie night in their dorm room, a female who was neighbors with one of my gay friends, asked where my musician PCA went when she came to help me get into bed. When the nurse PCA told her they worked for a person with a disability, this person said, “Oh, you mean the lesbian?” My PCAs were both shocked and angry that I did not tell them. I told them I did not think it was their business, but I was assured that it was.
The nursing student, who also came from a small town in northwest Ohio, started a bizarre sequence of what can only be considered mental and emotional abuse. She would come to put me in bed, and once I was there, unable to get out or get away, she would start preaching the Bible to me. She made me feel horrible about who I was. She would tell me she was just trying to save me from going to hell, but I spent so many nights crying myself to sleep. Knowing she works in the healthcare industry today caring for others, makes me sad, as I hope she never repeats this treatment to anyone else who happens to be LGBTQ. I feel a sense of guilt in not telling anyone, but I didn’t know who I could tell. I didn’t know I had rights.
Her musician roommate would defend her, when I told her what was happening. She was from a small town. She didn’t know anybody that was LGBTQ. I needed to try to see it from her perspective. I wondered if this was punishment because I was different, and I knew that my only other option was to go home, since I did not have any other care. I was dependent on this PCA for my personal needs. I have heard many other stories of abuse from others who rely on the same amount of care, and that’s the biggest tragedy of this. We feel like we are trapped, so we put up with the abuse. We feel that the other outcome of losing said care would be worse. For many of us, this would mean ending up in a nursing home, and we know all about the horror stories of living in a facility. So we endure the abuse, silently, though inside we are being tormented. In either case, we simply cannot win.
I put up with the abuse because I knew my home life was worse. I never told anyone, because I was afraid that I would have to quit school. In the end, I did end up having to go home, and return to having my mother care for me, because I wasn’t able to find reliable care. I endured abuse far worse at the hand of my mother, and shortly thereafter I attempted to end my life. I did not succeed, but the suicide attempt was a wake-up call. I needed to get out. I needed to get decent care or I was going to die.
Luckily, I found a light at the end of the tunnel. I was able to enroll at another school, which has better PCA support. I transferred during the next year, and I never returned home to my mother’s care for longer than a holiday, again. Ultimately, having the right PCA care saved my life. However, I remain vigilant and changed by the experience of being abused by more than one person who was tasked with taking care of me. I utilize those lessons now, when I’m hiring new people. I always disclose that I am a member of the LGBTQ community, for my own safety and protection. I will not hire anyone who does not support my right to live and exist in this world. I shouldn’t have to out myself, but that’s the world we live in, and I’d rather be safe than sorry.
The vast majority of people with disabilities who are victims of abuse know their abuser. Most abuse comes at the hands of caregivers tasked with our wellbeing. It happens quite a bit more than we realize, but because it is underreported, there are no accurate numbers for the amount of people who face such abuse. It is something we need to talk about, because those with disabilities who need home healthcare need to know this is not their fault, this is not right, and they have the right to be treated with dignity and respect.
I wish that I had the strength to speak out when it was happening, but fear is a powerful motivator. This has also encouraged me to be a better advocate for home healthcare services. No one should ever feel like they are trapped in any situation, especially with people taking care of them who do not have their best interests in mind. Those of us who are activists need to be mindful of this, and fight for better services. With the right services we can flourish, but in the wrong hands, all we face is misery and pain.
If you are in this situation, please be diligent. Things can get better. I am always here if you need to talk, and if you need advice. You just need to find a way to get the services you need, so you can get into a better situation. If I can help you do that I will. Please just do not give up. You are not alone.