 The other thing that I wanted to say is that I don't really know what triggers people. I'm going to be talking about my experiences with autism and with some physical limitations. So if you found the talk about the lady with the arthritis hard, then you might find this hard too. So there's that. All right, hi, everyone. I'm Whitney Leviss. I'm at Rosebubbit on Twitter. I'm a recent graduate from Ada Developers Academy, and I work at NERD as a web developer. I'm autistic, and I have significant physical limitations. Both of these are relevant for my talk. When I wrote this talk, I was all but diagnosed with lupus by my primary care physician based on test results in February. Since then, I was lucky to be bumped up to an earlier appointment with a rheumatologist, and she thinks that it's more likely that I have fibromyalgia and psoriatic arthritis. Any of these three conditions may be the truth of the matter, but test results are still out, and I wrote and practiced this speech with lupus. So that is the description I'm going to use today. I'm here to talk about spoon theory. It is a helpful paradigm for visualizing capacity for those of us dealing with significant limitations. Spoons are used to represent the capacity for the day. One must plan the day. When the spoons are gone, they're gone. One spoon for taking a shower, one spoon for getting dressed. Sometimes you can borrow against tomorrow's spoons, but that just leaves tomorrow with too few spoons. This is worse if you get sick or injured. So really, you don't want to use tomorrow's spoons unless it's an emergency. This is a concept introduced in a blog post by Christine, the founder of But You Don't Look Sick dot com. Her story is quite powerful, and I recommend that you read it. I'll be sending a link out with the resources for this event. I first came across spoon theory in the context of autism. It took me a long time to realize that I was autistic, though I noticed there were some ways I was different from most people around me. I couldn't describe what was different, just that there were things about me that were annoying to myself and others. I finally discovered that I was autistic in college. Reading the DSM-4 description was like looking in a mirror. I don't know whether these patterns qualify as clinically significant, but understanding this is the type of human that I am was extremely helpful. I could now look at what makes other autistic people, what helps other autistic people, and try those things out in my own life. I also apologize. I was not expecting to be crying. I have practiced this speech for a month or so now. And so I'd like you to try to pretend these tears don't exist. This is actually one of the reasons why I didn't want the audience to be feeling me. A fellow autistic friend of mine used spoon theory to describe her own limitations that were due to autism. This was a handy way to describe sensory limitations, emotional limitations, and social limitations. I picked up the language as a convenient way to discuss with other people who understood me how I was doing and what I was up for. This winter, I discovered that I have lupus. Lupus is an autoimmune disorder that can manifest itself in many different ways, as the immune system can attack any system in the body. For me, it hits my joints, mostly my knees, hips, and back. It also makes me very fatigued. That was I now use the concept of spoon theory daily as I try to understand what is reasonable to take on the day and what I should forgo for another day or perhaps not do at all. This transition has been very hard. I'm still pretty new to development and I have such great ideas that I want to make. And there's so many things that I feel I need to learn. I would really not expect to be cracked, sorry. But there are only so many spoons. There are many types of spoons. To get a sense of what life is like for people like me every day in the sense of spoons, we can think about spoon limitations for less limited folk in extreme situations. Everyone has quantities of spoons. There are physical spoons. An average person running low on physical spoons for the day may have run a marathon yesterday. There are mental spoons. An average person running low on mental spoons might be up after pulling it all night or trying to keep a sight online. There are emotional spoons. An average person running low on emotional spoons for the day may have recently lost a loved one. There are social spoons. An average person running low on social spoons for the day may not have had a moment to themselves for days or even weeks. There are sensory spoons. An average person running low on sensory spoons might have ringing in their ears after a loud concert or have to deal with being touched after a really bad sunburn or be experiencing bright lights while hungover. No doubt you have all reached your limits in the fore in at least one of these categories. Computer programmers tend to have a sense of their mental spoons. At some point they just can't program. All they need is a good meal and a good sleep and all of a sudden problems that seemed insurmountable are surprisingly doable. You know that sometimes you just have to stop. You have to drop everything and retreat. That is what it is like for people who reach their spoon limits. Different days come with different quantities of spoons. Average days are actually the best. I know I have limitations but they don't get in my way so long as I plan my movements carefully. I shower and get ready for the day. I can walk into the office, work upright for most of the day, walk home, take a short nap, then get up and do something in the evening. Maybe an event or grocery shopping or laundry or myself a nice meal. Bad days are when I don't have enough spoons to keep myself afloat. Usually I will choose to work from home in order to conserve spoons. If I do go into the office I will take the bus. I will take a nap in the early afternoon to rest. Then I try to get a bit more work done in the late afternoon. If I've gone into work I make my way back home and sleep some more and then just try to use up any extra spoons I have on small housework things. If I have worked from home I might have the spoons to do a load of laundry as well. Good days come with their own problems. The plus side of a good day is that I don't feel pain or fatigue. I can do a lot more. The problem is that without the twinges of physical pain I forget that I have lubus. And then I push myself too hard, wasting spoons I don't really have on primalist things I can do without. On very bad days I get almost nothing done. I slept for 16 hours in a day. And when I wake up I'm only able to do the little things. When I feel I can move I try to take a shower because sometimes the hot water helps. Oop. I also try to stretch so that I don't feel worse for having stayed in bed all day. On these days I try to keep up with chat so I know what's going on at work. The skill I'm working hardest to cultivate is my ability to count spoons. This metaphor is helpful for making a complex idea more concrete. As anyone working in software will tell you however estimation is a really hard skill. Similarly, one's capacity is also difficult to measure. But it is exactly the skill I need to build in order to take care of myself preemptively. Recently I've found that the latter part of my day is completely unproductive. One tactic that I've been using a lot to cope with my lack of spoons is more sleep. Resting seems to give me back some spoons. So if I sleep in the middle of the day it gets me two miniature days. The flip side of the napping technique is making sure I use my lot of spoons. My capacity cannot grow if I don't make best use of my spoons. I have noticed this throughout my life and I think it is also true of me with lupus. The less I take on, the less I'm capable of. The more I take on up to a threshold, the more I get used to taking on. The difference now is that if I pass that threshold the consequences are worse. Another hard part for me has been needing to be more transparent with others. I don't want everything to be about my condition and I don't want people to misinterpret me turning them down as a lack of interest. So I end up having to talk about my limitations more than I'd like. These interactions with others are often draining both socially and emotionally. As you can tell by my tears. As an autistic person I process these things differently. These conversations come with the same stress that others deal with. But have the added layer that I'm not of fear that I'm not being understood. Because I'm frequently misunderstood by people who operate more neurotypically. It costs more social and emotional spoons. So how does this apply to tech? Well let's start with the good. I'm very fortunate to work at Nerd. My team is very supportive. My boss provides us with the best health insurance I've ever had. Every medical professional I've seen has commented that I have really good insurance that will cover my needs. This makes a big difference for me. It allows me to focus on more important things. Reducing the spoons I need for administration. It makes me feel valued and respected as an employee. Nerd also pays hourly. This option provides me with a level of flexibility that is necessary in my life right now. While also providing the security of having regular employment. Part of their hourly policy is unlimited unpaid time off. What I need to take time off to take care of myself I'm supported in that. Nerd also supports me with other infrastructure. They offer me a bus pass which helps me get to the office when I'm not well enough to walk. The building has a service elevator so I'm not required to take the stairs. And in the office there is a couch downstairs and a loft for napping over the kitchen. Nerd also supports employees working remotely. They pay for such tech infrastructure as screen heroes so that working remotely doesn't automatically mean working alone. Nerd is also supportive of my autistic traits that I've struggled with in other tech contexts. The culture at Nerd achieves this by cultivating an environment that acknowledges and celebrates individual uniqueness, even individual weirdness. I once came across a problem at work that relates to my autism. And my coworker helped me break down the social cues that I was seeing and missing. She helped me come up with a battle plan for improvement. I still struggle, but it feels great to have such understanding that we all struggle with things in the job and that it's fine if some of my struggles are different from other people's. Outside of the workplace I've also been supported in the greater Ruby community and part of. Friends through these communities have expressed their support and been patient with me when I can't participate as much as I'd like. And the Ruby community has been a safe place to interact with others in less societally standard ways as well. AD Developers Academy has been supportive also, especially recently. This is where I learned to program and where I tried to volunteer my time to give back so other women can learn to program as well. We have a wide variety of ways to contribute that works with people so their skills can be put to best use. One great team I've recently become a part of is the Code Reviewers team. This is especially great for me because I can do it from bed. When my brain doesn't work well enough to tackle my own coding problems, I can provide feedback to other people at a lower skill level and still be productive with my day. This opportunity to refresh my knowledge of the basics is also great for me as a new developer. And here at AlterConf, being allowed to lie down makes me feel valued. It's a relatively small thing, but being asked what I need made me feel safe to accept the opportunity to speak today and attend so I can learn from others as well. When practicing the speech I discovered I could no longer stand for the full length of the speech. I sent the last minute email and was fully supported in that need as well. I want to thank everyone in the Ruby community who has helped me. If I forgot to list you here, I'm sorry. I really appreciate the support you've offered and given. I'm really lucky to have so much support. Unfortunately, there are still problems. Many workplaces are not as supportive as mine. I'm happy at NERD, but if I wanted to move jobs, or if I had to move jobs, I know that I could stay in this industry. This is still a huge problem in reality, but it's also a problem with marketing. If such flexibility exists at your company, do your employees know it? Do your potential hires know it? We expect fellow developers to be able-bodied, especially if we don't see apparatus to indicate the opposite. I need a chair. If your tech event does not provide adequate seating, I will feel unwelcome. If people only socialize with those who are standing, I will feel unwelcome. And sometimes I just need to lie down. I went to a conference earlier this year. One of my coworkers scouted out a place where I could lie down. It was up in the back of the theater behind the visiting seating. I tried not to bother anyone, and I tried to be out of the way. It was good that people left me alone when I was lying there, but people later felt the need to talk to me about it. To them, it felt like a joke, but it wasn't a joke. It was a need that I had in order to survive in the space. After I'd used the space a few times, I saw a staff member posted at the stairs leading up there. Perhaps I wasn't supposed to be there after all. I thought too uncomfortable to step past the posted staff member and potentially cause a conflict. I didn't have the social spoons to deal with that. I had already spent so many of them in the conference. I didn't have the energy to navigate both of them in autism. I ended up missing much of the last day of the conference due to not being able to lie flat. Other conferences are working hard to support a diversity of needs. One of these conferences is Distill. It had a chill area with comfortable bead bags. At the time, I didn't have physical limitations really, but it was a great place to recharge my social and emotional energy. And those bead bags make me feel like I could attend again. Another supportive conference is Strangeloop. There was one person there last year who had a match she took with her. The conference accommodated her need to lie on the floor. Conferences like these give me hope that I might be able to continue to engage in this aspect of the tech industry. I love conferences. And I would hate to think that that part of my career is over before it even starts. As an industry, it is important for us to be aware of how the ways we structure our work limit the participation in this work. Rigid structures of yearly salary and set amounts of time off have been the status quo. Some industries require more structure than others. When I worked in the service industry, it was necessary to employ people who had the capacity to be in a set place at a set time. But these don't work for all people and it doesn't work for their whole career. My mother is disabled and has not worked a regular job since I can remember. When I was in high school, the Department of Vocational Rehabilitation helped her set up a business plan and a business. She could now make jewelry at home when she was able and sell the jewelry when she was able. This way she can be productive at her own pace based on her own spins. We need programs like this. Thanks to agile methodologies, this is possible in software development. As an industry and as a world, we need to create spaces that give people opportunities to be productive to their capacity. I'm at Rose above it. You can tweet at me there. I have colored cocktail mini spoons that I was going to like hold up at various points, but I left them by my other stuff. And so I was crying by that point and he was like, you better. But if you would like one, you can come and introduce yourself later and I will give you one. I have no idea how much time I have left so there may be time for questions and I may or may not be able to answer them. I don't know why that's happening. We get people asked questions and she should be able to answer them.