Nobody Is Going to Hand It to You
K.L. Cleeton is an entrepreneur, poker player, and startup advisor who has lived with spinal muscular atrophy his entire life. As a frequent contributor to Smart Patients, he is launching a new series focused on how he overcomes challenges and builds opportunity. This article is the first installment.
When I was getting out of college, I was tickled with excitement to get into the workforce. Then I started applying, and one company told me they didn't think they could hire me because they didn't have an accessible bathroom. I'd already told them that wasn't an issue for me and didn't need to be taken into account. They passed anyway.
I've thought about that a lot over the years, and the biggest thing I took from it is pretty simple. Nobody is going to hand it to you. If you want something, you're going to have to go take it.
I don't think the people who turned me down were bad people. Honestly, they probably thought they were looking out for me. But when you have SMA you run into that all the time, people making calls about your life based on what they assume you need, and if you sit around waiting for them to realize they got it wrong you could be waiting a really long time.
So what does going and taking it actually look like? I can only tell you what it looked like for me.
For starters, I stopped trying to convince hiring managers of my value and decided to just go prove it. I invested in myself and became an entrepreneur. I'll be the first to tell you that path isn't for everyone. There's a boatload of failure and frustration along the way, and there were stretches where giving up legitimately felt like the smart move. I failed a bunch. But eventually something stuck, it grew, and a few years later I sold the company in an acquisition, which came with a job at the company that bought it.
You don't have to start a company to go take it, though. One of the most powerful things anybody can do, business or no business, is build a network. A lot of opportunities never get posted on a job board at all. They go to someone who knew someone, or to the person who stuck in somebody's head after a good conversation.
I know "go network" can sound like advice for people who can hop in a car and show up to every meetup and happy hour in town. I live in an extremely remote part of the country, so that was never really an option for me. What I was able to do, I did with a high-speed internet connection and a screen. That was the whole setup.
Once you stop picturing networking as a room full of people in suits, it gets a lot less intimidating. It can be joining an online community for something you care about and actually showing up in the conversations. It can be commenting on someone's work and meaning it, messaging a person whose job you find interesting, or helping somebody out without expecting anything back. None of that requires leaving the house.
The key is to treat those online connections like real relationships, because they are. Keep in touch and follow up, and be the person who remembers what someone was working on and asks how it went. Over time those little things add up to a group of people who know what you're capable of, and when something comes along, they think of you before anyone ever looks at an application.
I also learned to speak up about what I need before somebody else decides it for me. Nobody knows your body and your setup better than you do, and the sooner you say it plainly, the less room there is for someone to fill in the blanks with their own assumptions.
And going after it doesn't mean doing everything by yourself. Most of us with SMA rely on help in one way or another, whether that's caregivers, equipment, or accommodations at work. Asking for that stuff is part of going after what you want, as long as you're the one steering.
Now, some of the barriers out there are real and they aren't fair at all, and plenty of people who feel stuck are working their tails off. I just don't want those barriers to be where your story ends. If there isn't a door built for you, that doesn't mean you can't get into the room. Sometimes you just have to build the door.
I'd love to hear from you. Is there something you've been waiting on someone to hand you, and what would it look like to go take it yourself?
Thank you, K.L., for trusting us with your story and opening up so honestly.