One of the most egregious things my family ever did to me was exclude me.
I was born with a neuromuscular disability, which is progressive. What that means is that when I was younger and could walk I would get tired very quickly. I would have to stop and rest.
Instead of accommodating me by giving me mobility devices that would give me greater access, my parents encouraged me to keep walking and I would wear out my body. They thought they were doing the right thing, but all they were doing was hurting me.
Because of my disability, when my muscles don’t want to work they just don’t work.
While on my father’s side I only had second cousins (and many many many many second cousins at that), on my maternal side I was one of seven grandchildren. I was the middle grandkid – #4. Whenever we had family get-togethers the kids were all expected to play together – that is, everybody but me.
Photo shows young Dom eating an orange at a picnic table with a young cousin. Family members are also around including his grandmother who is across the table from him. She has dark hair mixed with white and is a white presenting person. Dom is about nine years old and has sandy brown hair that is shaggy. He is wearing a black shirt that says Zorro on it. Next to him is a little girl about four years old with blonde hair also eating an orange. There are two women with red hair, his cousins’ grandmother and aunt next to him. Taken the day discussed in this post.
Sometimes if the kids were doing things that I could do I got to play, but nearly every time we played together the kids would want to go off and do something I could not do, and I was expected to stay back alone and play by myself.
This was pure torture. Not only did I get to watch my brother and cousins go do fun things that I wasn’t even allowed to do, but I also had to stay on my own.
Even if I could participate sometimes my mother would tell me I couldn’t under the guise it was too dangerous or harmful to my disability. This led to intense periods of isolation where I was just expected to be on my own, and be alone.
This was great for my brother who as soon as we went to school together decided that he no longer liked me. I ruined his life according to him. Being born was the worst thing I could ever do not only to him but to my mother. Both of them feel that my birth ruined their lives.
My brother was intensely teased for being my brother, and instead of recognizing what was happening, that people were ableist assholes, he took all of that out on me. Rather than recognizing the people he was so desperate to have acceptance from were actually shit, he turned his back on his younger sibling and believed that I was responsible for everything that went wrong in his life.
Being excluded is one thing but being blamed for everything on top of that is ridiculous, though I know it happens to more than just me. This is actually a common narrative for some wheelchair-using disabled people.
For some of us wheelchair users, our families see us as nothing more than a burden and actually feel relief when we are not in their life. I always say the best thing I ever did for my brother was disappear 20 years ago. He has never bothered to contact me and he never will. He never wanted me as his sibling and it’s a relief to have me out of his life.
One of the worst memories I have from when I was about 10 or 11 years old was at a park when we had a family reunion.
My grandparents, aunts and uncles, and cousins were all in attendance. It might’ve been a reunion or a birthday celebration for my brother or grandfather who had August and September birthdays.
For a little while all of us children played on the playground equipment but then the kids all wanted to go do something that my mother deemed too dangerous for me to do. I begged and pleaded to go. I begged and pleaded for one of the kids to stay with me. All of them just looked at me with guilty expressions on their faces and then their parents told them that they could leave and abandon me – the last voice to weigh in was my own mother, who told the kids to go have a good time without me.
The only person who cared, who was heartbroken, was my grandfather, Willis.
He helped me climb onto one of the jungle gyms and he stood behind me and played with me alone as I cried. This was not the first time that I recall feeling intense sadness at the betrayal I felt by being excluded by my family. My grandfather was my only friend.
Today, none of my cousins really have much to do with me. I’ve given some of them ample opportunities to be in my life but other than a few social media connections, none of them really care to have a relationship with me. I feel that goes back to my mother and her siblings making it clear that it’s okay to leave me behind. It’s okay to not include me.
This is the thing – disabled people are a part of your families. We deserve to be included – and that doesn’t mean we get stuck with the older relatives while the young kids have fun. This means planning fun activities that everybody can participate in.
Truthfully, you don’t always get to hang out with your cousins if you don’t live nearby. My cousins were in Georgia and Pennsylvania, for most of our younger lives, while I was in Northwest Ohio with my grandparents. We only got to see each other when they visited our grandparents. So, why schedule things that one of the kids can’t participate in? There are plenty of fun things that everybody could do together.
You can also schedule multiple activities so some of the kids do things that are inclusive and some get to do more exploratory things that are more physical. Kids shouldn’t have to go without being able to do fun things, but there’s a time and place. Why does it have to be when the disabled relative is always with them?
I want to say that being excluded was not a one-time occasional thing, but it actually happened nearly every time my family met. The older kids always wanted to do something and take the little kids with them, but I was always the one that never got to go.
I would occasionally get to do things with my grandparents and one or two of my cousins at a time. My grandparents always let me be included – even letting me get trapped in a ball pit at Sea World one year because I really wanted to jump in them, but when the entire group was together I was almost always excluded.
It hurts my heart still to feel the pain that I remember from being excluded – it’s caused a hole full of trauma in my heart. It’s made me wonder for a lifetime whether I’m as worthwhile as the rest of my cousins. Whether I’m worthy of being included anywhere.
Please don’t do this to your disabled children. Please include them any way you can. They deserve to be a part of your family. Don’t leave them out.
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