When I was born, disability legislation was still emerging. A few years before I was born, a kid like me wouldn’t even be able to be mainstreamed at public school. A few decades before, it would be seen as logical to put me in a nursing home as my disability progressed. I would be considered someone with a limited future
By the time 1980 rolled around though, some of the first wheelchair users had graduated from college and things were slowly starting to change. However, it had not even been a decade since most of the ugly laws (laws that communities had on their books that kept disabled people from being in public under the guise they were too ugly and the sight of disabled people causing distress to nondisabled society) had been repealed. To this day there are still some laws on the books, a reminder of the hateful, harmful past.
While some parents were accepting of their disabled children, many families were like mine. Still caugh in the mindset that disabled family members were better left out of sight, out of mind. Unfortunately, that’s not how all of my family felt, so there was a lot of fighting about whether to include me in family activities or not.
My mother simultaneously fought for my inclusion while also being embarrassed by me. She was treated like I was a reflection of her – having a disabled child was her failure and she took it personally. Sometimes she took that out on me and sometimes not. But her own shame at being my mother was a huge part of the mistreatment that I endured throughout the first 20 years of my life.
My father, who was deaf, and often excluded from my greater family in his own way, both simultaneously supported the fact that I should be included, and also did not exactly try to rock the boat publicly because he had his own exclusion to deal with.
My grandfather would silently weep for the way I was treated. He would be the one to include me, but as a kid you don’t want to be left alone with your grandfather while all the other kids are playing together. I both desperately adored and respected what he was doing and also hated my exclusion – trying hard not to take the pain of mistreatment out on him.
And everyone else – well, they felt the exclusion was necessary. They felt that the exclusion made sense. Why make the other kids slow down and include their disabled cousin? It was selfish of me to want to be included and slow them down.
It also did not help that my mother in particular thought this was fine as it gave my brother something special. He could be with the cousins and be “normal” , something he apparently could not do with his disabled “little sister” present in his sphere. I was excluded so my brother could have something without me.
That was another thing. The idea that the attention I got because I was disabled was somehow special. A lot of it was medical treatment. I did get a lot of treatment when I was the poster child, but we are talking about any treatment. Being sick all the time meant I had my mother’s attention more than I wanted. My brother was jealous of that. To him he was a kid and he wanted his parents’ attention. I was taking it away so therefore it was my fault.
It’s not right but it is simple. It’s easy to understand why I was mistreated when you realize that this was guilt from my parents who felt they made my siblings suffer by being my sibling.
Having to Apologize for Existing
One of the experiences that really solidifies how horribly I felt about being excluded happened during a family reunion. We were playing in a park, over near the Toledo Art Museum.
The other kids (my cousin) wanted to go do something my mother saw as too dangerous for me. So, all of the children abandoned me with the adults. This was a common occurrence during family reunions or get-togethers. The kids would always get to play together without the adults and I would be abandoned.
When we would go to visit my aunt and uncle in New Jersey for example, the boys (my two male cousins who were one and three years older than me) and my brother who was in between their ages, all played together while abandoning me to play on my own.
It was just expected that I would play on my own. I would crawl up and down the steps into the playroom, playing with all the toys and making my own stories and adventures up. But it was a lonely childhood. This was a common occurrence. And if I asked to play with them I was told that we couldn’t force them to play with me. That would be asking too much of them.
It was easier to get away with this I think also because they could justify it as boys not wanting to play with a girl. But what it was was downright exclusion..
When Your Family Blames You For Existing
The most egregious example of me being my family’s shame happened around the time my Uncle Woody moved to Georgia. My mother, Pam, is the oldest of three. She has a younger sister, Debbie, and a younger brother, Woody. She doesn’t get along with Debbie. But she always claimed Woody was her baby. She is eight years older than him.
I loved my uncle so much. My dad had a lot of health issues so he could not lift me up or carry me. But my uncle would toss me around in the air and lift me onto the slide and all kinds of things. I would stay at my Uncle Woody’s house in Lambertville, Michigan with his wife and my little cousins. My brother did not. I thought we had a special relationship. I thought my uncle really really loved me because of that
The greatest mistake I ever made was believing my uncle really loved and cared about me. I was blindsided when my mom came to me when I was around nine years old and told me that our family had fallen out because of me.
At the time, I knew my family was fighting but I did not know I was the reason. Uncle Woody moved to Georgia because he was a contractor and he could not find work in Michigan/Ohio. Moving south provided better weather and more work opportunities. He found that outside of Atlanta, and in the summer of I think 1989, he moved to Georgia with his wife and three children.
Around the time his wife was also using a lot of drugs. I don’t know the situation there, but I know that contributed to ending their marriage within a few years after they moved there. But I guess I also contributed? You see, his wife secretly harbored hatred for me. I didn’t know that.
The big blowup happened around the time they moved. My uncle, prompted by his ex-wife, accused my grandparents of caring more about me and my brother than any of the other children. He accused my disability of ruining the family. My grandparents were very involved in helping take care of me when I was sick and dealing with my disability. So, that’s the attention they felt was taking away from their children.
The thing though was that I helped take care of their children. I was changing my cousins’ diapers by the time I was three or four years old. When they stayed at my grandparents, which was a lot (which was also true for me) I was helping take care of these kids.
I don’t know what the final straw was that made them decide I was the problem though. But, my uncle and his ex would not talk to my mother or grandparents because of me. My grandparents never told me. They did not blame me. But my mom came to me in tears telling me that her brother would not talk to her because of me.
My mother, who is bipolar (it was undiagnosed at this time – she got the diagnosis when I was a young teenager), and has other mental health issues. I 100% believe did not understand the harm she was causing by doing this. I think that all she thought about was herself at that moment. But I was a child and I was horrified.
My mother wanted me to call my uncle and beg him for forgiveness. Could I beg him to talk to his sister again? She missed her baby. She did not care about what she was asking me to do or my own mental health.
So I did. I made that call. I called him up and I told him I was sorry for whatever I did.
He was crying as well and he accepted my apology but why did I have to give an apology at all? What did I give up and myself by having to apologize for existing?
I was on the phone for probably 30 minutes to an hour crying and trying to talk through everything. He was having trouble with his wife by this point and I think they were separated or on the way. I guess that’s why my mom thought it was a good time to reach out to him again.
I never had the same close relationship with my uncle that I had when I was little.
In fact, when my grandfather was dying, he contributed to preventing me from seeing him because I’m trans.
I remain my family’s shame. Now, more because I’m trans.
In truth, my family has never seen me as a human being. I will always be their shame. Which is sad because they are missing out on a really great person.
Comments