28th of May 2022
This letter has been on my mind for while. Someone said something amazing to me and it changed the way I look at my life and myself. It was such a gift that I needed to share it.
For context I haven’t ever really had a job. Not a paid one. I have been getting money from the government for many years, because my mental health was so bad working or taking an education just wasn’t an option. I know it is a privilege to live in a country where being taken care of like this is a given and I never had to worry too much about money. I didn’t get a lot of money, but I had enough. I could pay rent, insurance, food and other necessities, there was enough and a little left over. Not enough for saving up, but enough to be able to go the cinema or buy train tickets to see extended family or friends, or other small things that made life better if I prioritised right. Like I never prioritised decent internet and just used my phone, but I’ prioritised good materials for my bullet journal since it helps me so much. I didn’t have a lot but I felt secure. And though I never had to worry about paying bills, I always felt money was tight.
And of course there is a certain stigma to being someone getting money from the government and not from working. I always felt bad that I didn’t earn my own money.
I just got my first real job. I guess it would be considered unskilled. It is part time, but because of my disability I will get my pay supplemented by the government. My employer will pay for the hours I work and the government will supplement the rest so I will get almost as much as someone working full time.
And for the first time I realise that other people (not everywhere in the world, not every one, but a lot of people around me, the avarage worker in my country) have had financial opportunities that I never even considered possible. I always wondered how anyone could afford to eat at a café, or own a car, afford decent birthday presents for people in their lives, or afford to rent a place more expensive than what I could afford (rent is so expensive). But just this unskilled job, this job where I am still getting money from the government, means I will get almost twice as much money as I have ever been used to. And suddenly it makes sense that other people can afford stuff.
I know how privileged I am to live in a country that helps me so much. But for the first time I think it hit my how much my disability (autism, chronic depression an c-ptsd) have denied me, not just the same accessibility or the same options, but also the same financial opportunities as healthy people. Money isn’t everything, and I am and have been very grateful to have had as much as I did. But I just have whole new perspective on things now.
Something that was recently brought home to me when I was at a social gathering meeting new people and an older man was bragging about his rich son and his own money. He talked so much about all these status symbols that felt so foreign to me that even hearing someone care about it was a whole new experience. No one in my family or friends circle have money. Most of us struggle with our health in some way and have disabilities that makes getting a job and working difficult. And my parents never had much money. So hearing someone brag about fancy cars and travels to Paris several times a year was just bizarre.
So I think I will share that gift now. Back in the fall I was talking to an older woman. I hadn’t really gotten the best impression of her from our first couple of meetings. But I wasn’t able to avoid her and did my best to be polite and talk with her. This day she brought up how she had always worked, ever since she was very young. She talked about her working experiences and how she even now as a pensioner did all kinds of things to stay active and never allow herself to be lazy. I shuffled my feet a bit and told her that I had never really worked. She asked me why it wasn’t real work? I shrugged and told her I had never gotten paid, I was never hired. And she looked at me so seriously and told me that I had worked and work is work. And suddenly I wasn’t seen as just some “lazy” person getting money from the government, I am someone who has worked a lot in my life. (There is a lot of stigma and stereotypes about the kinds of people who get money from the goverment, and despite my best effort I had definitely internalised a lot of shame about to being able to provide for myself).
I have done volunteer work. Lots of it. For 17 years. And I put in a lot of hours and effort. I just never got paid.
As part of the deal of getting money from the government is that I had to try to get back to either education or get a job. And part of that process allowed me to work at different places to determine how many hours I could work and under what circumstances I work well without comprimising my health (this process in the end proved that working part time is right for me and that is how I was finally aproved for the kind of part time work where the goverment still supports me). The employer doesn’t pay for that, but there are a lot of rules in place to ensure that the employer isn’t taking in free labour instead of hiring people. I did a lot of work like that. A lot. For many years. I want to work. I want to contribute. I want to be busy. I put in a lot of time and effort. Just like I would if I had been hired and paid to do it.
I’ve had one of my worst depressive episodes during lockdown specifically because I could no longer do any of that. It wasn’t just that I was sitting alone in my apartment, but that all the work I usually did was shut down and there was nowhere for me to go and help out and be a part of something. I never knew how much I needed to contribute.
I am not sure how to explain how much of a gift it was to have someone look at me and tell me that my work was work. With or without pay. For someone to acknowledge my efforts and not let my contributions be ignored because I wasn’t hired. I’ve spend a good deal of these many months trying to understand how much of how I have spend my life have actually been spend working. Which is a little funny because I had to write my CV to apply for jobs, and had already written all these things down. I had already identified these things as something that gave me skills that would be useful in my working life.
During the last six months there were two other job offers. One that was a clear maybe if the money was there and but if, by then, they definitely wanted to hire me. I hated the work. I just wasn’t me. The people were nice, the place had this amazing atmosphere. It was the kind of place I could see myself showing up and helping out because I had some spare time and just wanted to hang out or see people, or I missed working. But I knew it had to be on my terms. Like volunteering is. Being forced to be there sucked. And most of the workday there was nothing for me to do and I just sat around getting stressed out by having to be there and not knowing what to do. It also wasn’t an actual job offer yet, but just being told they would hire me if they could. But I still had a hard time admitting that I didn’t want the job.
The next job offer was serious. And I felt good about working. There was something to do and I could be effective (something I like a lot). I had things to do, I knew what the workday would bring. It was good. The work needed to be done and I liked that I could do it. But the work didn’t feel satisfying. There was no joy or satisfaction in what I did. I was severly depressed at the time, but still. I spend too much of my days turning myself of and trying not to think or feel.
The people there were very nice and did so much to make me feel welcome and give me the kind of work environment I need. But I wasn’t sure it was for me. Especially because it was a long way from my home. Something that hadn’t bothered me before. But it bothered me here. Because unlike the other places I had had to travel too, this wasn’t in a city. This was in the middle of nowhere. The schedules of the bus and the train didn’t fit together, giving me a lot of waiting time. And not waiting time somewhere interesting. Just waiting time in a field with no shelter, while waiting for the bus, or on an empty trainstation with nothing nearby. The walk from the bus stop to the workplace was near the motorway and it wasn’t designed to be walkable, and there were a lot of trucks. It felt a little unsafe to walk there. And it took such a long time to get there and home. Something I didn’t mind in the city where I could visit friends, look at cool shops and in general combine a work day with other things. I wanted to move to the city and getting a job there would make moving a lot more possible. But this was in the middle of nowhere. And there was no way I was moving closer to that job.
Again I felt bad about turning down an actual job opportunity. And so many people told me to just take the job for the money. I would get paid I would have financial opportunities, there would be so many options opening up if only I had the money.
But I have never worked for money (I am fully aware what a privilege that is). I have worked because I wanted to. Because I loved the work and the place and the people. I have worked because I felt good contributing to something and making other peoples lives and work a little easier. I worked because I learned something and got to grow as a person. I worked because I got to do cool stuff I wouldn’t otherwise have been able to. And here people were telling me that the money was more important. And I knew that if I took that job I would be stuck. That before long I would be used to getting more money and that going back to less would be so so difficult. I knew how easy it would be to say yes to this job and use all my energy going to and from work, and working at something that didn’t make me feel anything. And how would I look for something else when I was too tired to function after two workdays and needed several days to rest to get ready to go back?
The money matters. And it made me doubt my decision so much. Especially with the people telling me the money would make such a difference in my life. But I felt like saying yes to that job would have been a slippery slope for me (personally). It felt wrong. Even though I am partly still sad that I didn’t get to stay and work at this place, with the nice people. I even think working there a few years would have opened some doors to new opportunities if I wanted to look for a different job later. It is a very well connected and well respected place. But I spent too much of my workday turning myself off. It was work, and work I was very good at, and earning the money would have made a big difference for me. But it also felt… I don’t know. Working for the joy of it, working because I want to and because I love what I do somehow felt more pure (for me personally). I didn’t want to lose that and I feared I would.
And then this job came along. Close to my home, in the field I want to work in, the right amount of hours. So I finally have my first job. A real one. Where they pay me money for showing up. I am not sure I love what I do. But I have enough energy at the end of the work days to do things I love somewhere else. And this job will give me the perfect excuse to try and get to do some amazing things I might have trouble trying out otherwise. It’s still new and there is still a lot I am not sure of. But I feel better saying yes to this. Now I just hope it will be good.
On a darker note I had a bad experience with some co-workers. I knew that ableism against autistics is a thing. I know about the kind of things that some people write online. I had never experienced hearing them out loud, in real life before. I am not sure I want to go into what was said. But it did make me unsure if it will be a good workplace long term. I told the people off, and argued about what being autistic is really like from an inside perspective. But I am still shocked. I am not sure how I will feel seeing these people next week. I am not sure I will ever truly feel at ease there knowing some of my co-workers view autistic people (me) like that.
I also worry if coming out as aro-ace will be safe. I know I will come out anyway. These people clearly need to learn that the world is more than they imagine it to be and that people different from them aren’t less than them. I am often prepared to be others first learning experience when it comes to asexuality and aromantisism. But I now know it will be harder than usually. And I will probably have to fight for who I am in a way I am not used to.
Their words hurt me a lot. But I guess I have always gotten of relatively easy on the ableism front. I’ll find my feet again and be ready to either change some minds or tell those minds to talk about autism in that way some where else. I won’t tolerate it.
I reached out to an autistic group online and got some support and feedback after the experience and they reminded me that when I stand up for myself and I am also standing up for them. It was such a kind a reminder and their acknowledgement of my actions was something I didn’t realise I needed. I am not alone even though I so often feel it. And what I do to stand up for what I believe is right, will help the next person. I am not just fighting for myself.
I am still sad and hurt and so angry. I think will remind myself to allow all those feelings to come and sit with me so I can hear them out. They have a good reason to be here now and I should welcome them in.
To whoever is out there reading, thanks for sticking with this long letter. I hope you are well wherever you are. I hope you have your communities backing you up. I hope you have your work acknowledged, you deserve that. I hope you are financially secure and I hope you have or get the opportunity to work for joy and not just for money. I hope you invite your feelings to sit with you so you can hear them out. Feelings are often so much wiser than we are. As always thank you for your time.