Pretty much everything in this world is transactional. We do things for other people who, in return, do things for us. Capitalist jobs trade labor for money, which is then traded for food, clothing, housing, etc. But, what happens when we do things for people in order to keep them alive?
My mother used to be a Wall Street trader in the 80’s. Think Wolf of Wall Street, but with a 5’2” woman who went to Catholic school in Queens. When I was born, things changed for her fast. Because of my disability, I couldn’t have a regular nanny or be dropped off at any daycare. My mom was basically forced to leave her job so I could be cared for. Imagine giving up a job people would kill for to make sure someone could live comfortably. That’s unconditional love.
I’ve battled overwhelming feelings of guilt for decades over this. I couldn’t help but feel like a burden. I convinced myself that it was my fault my mom gave up her career. If that gene in my DNA wasn’t faulty, she’d still be making bank and living the life she had worked so hard for. It took me an incredibly long time to understand that it wasn’t my fault, it was the system’s.
Disabled people in America are forced to live well below the poverty line. We can’t own anything of real value or get married. If we do, we forfeit our eligibility for Medicaid, which is the only form of health insurance that covers the personal care assistance services we need survive. It’s all by design to make obtaining these services difficult to achieve. The only way to escape this vicious cycle is to make a TON of money. This is hard for anybody, especially for someone who can’t put a French fry into his own mouth.
But, how do you separate the understanding that the system sucks with the fear of pushing people away because of something you can’t control? How do you balance the mental conflictions of feeling like a burden while also maintaining healthy friendships and romantic relationships? I can’t force anybody to do anything for me. I’m mentally sound so it’s up to me to figure it out. However, I’m fully aware that the people in my life feel obligated to do things for me. This makes communication and setting boundaries extremely important, but is usually easier said than done.
I’m not getting any younger so I want to settle down with someone, but how much can I expect from a life partner? If my disability is too much for someone, then there’s nothing I can do about that. I always like to think that my dopeness and charm more than make up for my physical limitations, but that’s not the reality. Even the above-average person can only handle so much. If my future wife has boundaries about my care, I must respect them. It’s the absolute least I could do for someone that makes me feel wanted, special, and dignified.
I’m eternally grateful for all the caregivers in my life and everything they do for me on a daily basis. I literally wouldn’t be alive if it weren’t for them. The older I get the more my abilities to listen, communicate, and compromise improve. If someone chooses to be in my life and value everything I have to offer as a person, I’d hope they know that they’re not alone and always have the option to have help helping me. After all, barbers don’t cut their own hair and letter carriers don’t deliver their own mail.
Solidarity forever.
-Steve