Disabled While Working: Working from Home

Since October is National Disability Employment Month, I thought I’d take the last day of the month to talk a little bit about what it’s like for me to be disabled and to work. This is kind of like an Accidentally Adaptive post, because I want to share a little bit about why working from home is so great for me as a disabled person. I know that many, many people love working from home, but I want to share a little more about why working from home isn’t just a “perk” for me – that it actually is an accommodation for my disability.

Before the pandemic, I actually never had worked from home consistently – and now that I’ve been working from home for over two years, I genuinely can’t imagine going back to working in the office every day. Here are a few reasons why working from home makes my life so much easier.

I Get More Rest

Sure, I know what you’re thinking… everyone gets more rest when they work from home! But it’s a little more dramatic for me. I shared my daily schedule in this post, and you’ll notice that everything just takes me longer. The whole process of getting up, using the bathroom, getting a shower, and getting dressed can take me 2-3 hours, just to be clean and presentable. So when you add on a 30-40 minute commute to that, you have a very early wake up time! I think that my first alarm used to go off around 5:15 AM. And because things at the end of the night take longer, too, I usually didn’t get to bed before 11 PM. That’s not really enough sleep! So eliminating the commute time – and being able to finish getting ready while I start working – has made a huge difference on the amount of sleep I get, which in turn makes a huge difference in how much better I feel every day.

Using the Bathroom is Easier

When I worked in the office, using the bathroom was complicated. I had to find a time that worked for my schedule and my mom’s schedule, so that she could meet me at my office or somewhere nearby to help me. This in itself would be time-consuming, but when you add in the time it takes to find an accessible bathroom that’s big enough and unoccupied, it typically took about 45 minutes from the time I left my office to the time I was back. And even the “best” public bathroom wasn’t really great for me – at home, I use a toilet seat to give me support and make transferring easier, but it’s not at all portable. So being able to use the bathroom in my house and not have to worry about all of this is really, really nice.

Eating is Easier, Too

Eating during the day is another thing that sounds so simple but is actually a lot harder for me! I’m limited in what I can eat – there are certain foods that are harder for me to chew or swallow. I’m used to it, and I know what works and what doesn’t, but it makes eating outside my house a little bit harder. Eating at a restaurant is one thing, but to-go food is a little trickier! I actually had a microwave in my office so that I could bring in food from home and heat it up, but I still had to carefully plan what I brought. I also had to make sure that whatever I brought wasn’t too heavy (weight-wise) so that I could physically lift my food out of the lunch bag and into the microwave. And if I wanted to get food delivered, I had to make sure to plan it carefully so that it didn’t interfere with my lunchtime bathroom break. So having my whole kitchen available to me whenever I want just makes things much easier!

My Office Setup is Perfect

My office setup at work has never been bad – mostly because I don’t need that much adaptive office equipment. But it’s still hard to get everything in the way that works best for me in a small office! Because I can’t reach most shelves or open drawers to put things in, I mostly need open space at wheelchair height.. or someone to help me reach things. Both of these are difficult to find in an office, but much easier at home! And even just having my desk and laptop exactly the way I like them, with space for my food and drinks (and microwave, and fridge…) is much easier at home than it is out in public. If I drop something, I don’t need to worry about finding someone in a nearby office to pick it up for me. I don’t need to worry about an elevator in my office being out of service, or about getting to and from my office in inclement weather. Everything is just how I like it so that I can be my most productive self!

Timing My Medicine is Easier

I only started taking Evrysdi, the SMA medication I take daily, after I’d already been working from home, and I’m actually not sure how I’d do it if I was working in the office. It’s a rather particular medication – it needs to be taken around the same time each day, with a full stomach, and it needs to be kept refrigerated until it’s taken. It’s also recommended to take it in the morning/afternoon and not at night, because it was giving some people insomnia. So right now I take it around lunchtime – but I wouldn’t be able to take it at lunch at the office, because I can’t take it independently, and because it needs to be kept refrigerated. I’m sure I’d have found a way to make it work if I were working in person, of course, but being home makes it so much simpler.

I Have (So Much!) Less Stress and Anxiety

It’s probably not the kind of stress and anxiety that you’d think, and it’s hard to really describe – it’s just the mental load of worrying day in and day out of getting ready and out of the house in time – so that no one was late for work or meetings, so that no one was stared at as they walked into the doors of their office. So that enough time passed before we had to do the whole lunchtime bathroom meet up without feeling like we’d just gotten to our desks to start working. So that we didn’t have to stay at work until 7 pm and get home late and get to bed later. It really takes a toll when you live with it day and and day out. To not have to carry that every single day – it’s huge. And it’s not just me – it’s because I get to work from home, but because my mom and dad and sister do, too. It’s an accommodation that doesn’t work in a silo of the disabled person only – it has to include caregivers too.

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