January 17, 2021

Power imbalance of disability

By rosieweldon

I need people. It’s as simple as that. I’ve made my peace with it (okay fine, I’m working on it). People see me as ‘independent’. Because I can work, I guess? Because I have my own home?

I am an independent autistic adult. I hate to knock down anyone’s charade, but I am not independent.

Some, of hundreds, of examples:

I was walking back to my home on my lunch break and was met by roadworks. They had shut the pedestrian crossing of the road outside my home. I started to spiral as tears fell from my eyes. My fists clenched and I stared at the floor. I wanted to carry on my lunch time routine before returning to work but I could not. Not only was I met by the change, I had no sense of direction to safely get home. I phoned my brother and he guided me through the route change and calmed me enough for me to return to work. Without him that day I would have gone into a big meltdown and struggled with my workday.

When I bought my beautiful little home, I had to go into a bank and physically hand over my driving license. Not in a million years can I do that. My sister, without hesitation, arranged to meet me outside and guide me through the process.

These aren’t two examples from a few months. They happen all the time. Most days when I’m not in a weird lockdown world. Now don’t get me wrong, I would do the same for my siblings. I would help both in a heartbeat with whatever they need. But the cold facts are they could do with my help sometimes. I need them constantly.

The people I rely on most are my mum, stepdad and older brother. Those I can accept more easily. While yes, I am an adult and wouldn’t usually need them so much, they are in family positions to look out for me. To be helped by my older brother and mother doesn’t bother me as much as needing others.

Other people I struggle with more. When I need my little sister to guide me through. Or need a fellow student to talk for me. Or need a work colleague to knock a door for me. Or need a partner to guide me through how to ask someone something. That is where I struggle. Not because I need help, but because it throws out the dynamics of those relationships.

One of the great challenges around romantic relationships can be managing expectations.

— David Anson

The main reason I do not want to be in a relationship is because I do not want to rely on anyone that way. To give them power over me. To feel indebted to someone. I don’t need a partner. I do live alone, with the help of my family. But if I had a partner would they fill that role? Would it have been them that helped me with the bank? Them that guided me through a city I was lost in? I do not want that.

Maybe that’s the problem. That it would worry me to need someone so much. I bet you are all lining up to comment that we all need people sometimes. And yes, we do. I was my mother’s carer. I have seen both sides of this coin. It is for that reason I also know what it is to give and never seek anything in return. My mother is not and never has been indebted to me. So why do I fear so greatly that others will feel that way about me?

Do friends and family that help me feel I owe them something? Or is that a self-doubt issue I need to work on? Most likely the latter. Nevertheless, it is something I struggle with and something worth acknowledging.

When disability means you need people – there is a shift in the power dynamic. Both parties need to acknowledge that and do their best to work on the psychological affects of it. Family carers need to ensure those they care for don’t feel that way. Those being cared for, in this case myself, need to work to not feel less than.

I know I am not less than because I need help. No matter how much help I need. But I would be lying if there weren’t times that I wish I didn’t need help from those I never wanted to seek assistance from.

I don’t want to enter into a romantic relationship instantly feeling like less than the other person. That I will need them. I’ve fought to be mentally resilient. I’ve built a stable support system in my close family. I see no way to let someone into my life without also embracing them as a part of my support system. I don’t know if I am brave enough to take that risk. To risk someone taking that imbalance of power and using it against me. It is a ticket to manipulation. And manipulation is something autistic people are incredibly vulnerable to.

Please note: This blog is in no way saying people that need help shouldn’t be in relationships. It is a deeply personal exploration of my own fears, insecurities and doubts.

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