Dear Sophie - On Disability and Loneliness

This was going to be a letter.

This is the hardest thing I have written, and I have written some pretty hard things.

I’m well aware of loneliness being a problem for a lot of people in similar and different ways.

This is me.

I have a disability, a movement disorder which impacts my mobility and communication.

I have been so lonely. I have been so lonely that it hurts. I didn’t have any friends growing up. I was kept at home. Dad would say you are lucky, they are bullied at school. My sister and my brother were kept at home too.

My little sister wouldn’t let me play with her baby town because she was afraid I would knock it over. I could see her point. The Dystonia. She and my brother made friends more easily with the little social contact we had. I didn’t. For many reasons my brother and sister were not close to me.

I desperately tried to make friends with this girl and my sister said that girl had said to her ‘I like your sister, but I like you more’ I said you’re lying. My brother said she’s not. He heard it too. The girl quickly became my sister’s friend. Years later the girl, now a young woman, said sorry I should have spent more time with you and then she was gone. Someone else tried to be my friend, but she was very quiet and I was so so awkward.

Friendships based on pity never work. You never really interact. I need people to want me for me.

My sister and brother finally demanded to go to school and there was me, all alone. I didn't because I thought I was too disabled. And I was so behind on learning I felt too ashamed. I was and am now, very screwed up because of this lack of interaction, talk about iso.

I had an operation which reduced my Dystonia a lot, but then I began to lose my ability to speak. Me, a person who finds it hard to spell.

I had become slowly closer and closer to a woman that tried to give me respite from my family, but I needed someone I wasn’t always looking up to. I have had many older friends and they were important, but they were more like having mums than friends. I needed friends who were at a similar stage in life. But didn't know anyone like me.

I finally got to do some adult education (called TAFE in Australia), and spoke up as much as I could in class, but I was still so unsteady on my feet. I only got help to move around at TAFE. My mental health really suffered again every break from classes.

People would always say you’re amazing, you legend, but that doesn’t mean friendship. I couldn’t talk as much as everyone else, therefore I still got passed over and many of the other students were too young. As a consequence I grew more friendly towards my teachers as they actually talked to me.

I would wonder what if people could see it, could really see it. Maybe I will go into a catatonic state and people would truly see me. All the pain. But they wouldn’t miss me.

I got my first power wheelchair when I was 24. I gave a presentation and the next time in class a young woman said ‘I’m so sorry I have been working alongside you, but haven’t seen you’. I did make a few friends then and they even visited me a lot after I had a stroke, but then I moved too far away.

I was so desperate to get into uni to study fine arts. I thought yay I will be able to make lots of friends, these will be my people. But, so often I would be in a classroom before class with everyone talking, but not to me. They were already busy with friends they had from school and the rest of them formed friendship groups without me. I got my apartment on my own and that summer I really really suffered again with the social isolation, so much more because I know I had done everything I could. One of my friends out of the blue said she would come over for a couple of days and I thought YAY. Then she texted a few hours before saying sorry boyfriend is in town. I couldn’t reply. I broke down and no one was there to pick me up. No one was ever there to pick me up. I needed a summer job, for the social interaction but literally did not have the energy with my disabilities.

I had a second operation to reduce the impact of my Dystonia. I was hoping beyond hope it would work. I know that without the disability I would be able to fit in more to this ableist world.

People came to see me after the operation and resulting stroke (the same stroke) and they promised they would do more but many didn’t. And some never came at all.

The very thing I hoped would make it better instead made things 100 times worse.

I think I understand it, it’s so subconscious. Like who would talk to someone like me when they could talk to someone easier, like who would be friends with me when they could be friends with someone more able. People go for friendships that are the most available to them, and I’m not because of my disability, because of ableism. I have tried to overcome it, but yeah it’s an ongoing fight.

I find I’m doing 80% of the inviting and that’s emotionally exhausting. Or a lot of the time people do ask you at the last minute and you almost always have to say no because your timeline is more rigid than able bodied people. I need to know ahead of time everything I’m doing in a day. There are your supports to be mapped out ahead of time, your devices need to be charged and you yourself have less physical energy. You can’t just drop everything and have fun. And will you have fun? Or will it be yet another access nightmare which it so often is and then will the friend think twice about asking me out again?

Letting go isn’t an option, because there are so many more factors that if something simple does go wrong it impacts your life for months rather than days, or forever. And many of us people with disability have experienced the consequences of letting go.

I now often have more fun with a support worker because they understand more about me and my needs. And they stick to a frigging time and don’t change plans last minute. But they aren’t friends or at least they shouldn’t be.

I have tried groups, but often the communication moves too quickly for me.

Again my speech disability is the hardest thing to get over. I am so slow. I can find talking to one person who engages with me is ok, but as soon as two able bodied talkers are there I often can’t keep up with the conversation.

And though I desperately try try try to ignore it, I am slow at typing and feel or think I feel their impatience rising while I type something.

Things have gotten a bit better, people seem to be more open to me now and I have some really good friendships but there is still a long way to go. Still a long long way to go. And my advocacy work has helped me to feel more me and build a stronger version of me. And friendship isn’t everything, we wouldn’t get anything done otherwise.

But sometimes, too many times, I’m feeling the hurt of being alone, the ableism getting in the way. And remember I have been alone a lot and the trauma of that will always be with me.

I’d rather have been bullied. The nothingness is so painful.

I have never been able to truly let myself fall knowing that there was someone there to catch me. And I have needed to, so many times, needed to fall.

And in some ways worse, I have no one really relying on me. And when the chips are down I am useless anyway in this ableist world.

People say I am important to the art world, being asked to do shows has been wonderful, but I don’t feel part of the conversation.

So much of the world is conversation and remember I’m not in the conversation.

We all need human interaction or our mental health sufferers.

I have suffered, and am suffering now, but friendship is not a given, it can’t be forced. I guess it's that sense of community I'm really missing.

So yeah.

I don’t know what the answer is but hopefully me writing this is a little step in the right direction towards greater understanding and inclusion.

updated 28 December 2021