I'm a Slave 4 U on the Yellow Brick Road
Masking is a big thing in the disability community. Many of us learned that we've needed to hide parts of who we are to be accepted in a world designed largely by and for non-disabled people. I am no exception to that. Even in speaking and writing pretty openly about my experience, there's still more of me hidden than not. There's still more of my daily existence that has hidden elements at play. Masking is part of creating psychological safety for myself and trying not to make people uncomfortable with the real me.
Between high school and college (age 18-22 for me) came a lot of change in direction for me. I needed safe spaces. At the time, the safest space was in a corner of my dad's basement behind his drum kit. I was the drummer in his band, with an old high school friend of my dad's, and a friend of that guy's. We were the “Old Farts and the Peep” (I never liked that name). Like many bands, the collaboration was complicated. I was just a kid to them. But, for me, I was an adult who was more of an equal than the other guys really knew.
At this stage in my life, I'd spent several years managing the household finances, making sure my dad got the bills paid on time. I'd been doing that since I was fifteen years old. My dad was on a lot of medications at that point and was starting to have more bad days than good. Right after I turned twenty, I severely injured my right hand. I tripped and fell after retrieving the mail because I was in a hurry. I tried to catch my fall and accidentally put my hand – wrist first – through a window. I would have reparative surgery. That was surgery number eight for me. This accident changed a lot for me physically and mentally.
The surgeon told me I might never play music again. That band I was in wasn't going anywhere anyway, but it was my outlet for becoming a codependent caretaker to my father. That dark corner of the basement was where I came alive counting beats. Now, I'm being told that I'm going to have to live with new physical limitations. I was hurt and angry. I channeled that into my recovery.
Apart from nerve damage, my recovery exceeded expectations by a lot because I made recovery my life and it was largely motivated by anger at the matter of fact way the surgeon said life as I knew it would never be the same and my desire to give him the finger in that moment (which I couldn't do because my tendons had been severed by the window). After six excruciating months of recovery and surgery, I was able to raise that finger.
Here's where the hidden impacts play their part. When people tell me I can't do something, they expect me to have to accept that like it's no big deal. I'm left having to adapt to the situation because there's usually no point in arguing with people when they assume I can't do something. In the case of the injury, it was literally on me to prove that wrong. And, I did. But, it cost me a lot.
I carried that anger throughout the recovery process. It pushed me through the grief of losing my aunt during that recovery process. I was not a happy person to be around then, but I was unstoppably motivated by anger to overcome the hand I was dealt. I was pretty much the only one that refused to believe that my only option was to accept the new limit. That refusal to comply led to my success.
Nerve damage and scar tissue are all the limits I have from that injury. I would play the drums with the band again, but I had to buy drumming gloves to do so because of the nerve damage. I would play the guitar again but I had to buy guitar pics that hooked to my thumb because I can't feel them in my fingers. I wrote one of my favorite songs out of that experience, “Color Me Broken,” and I carried the weight of all that anger and grief like it was just another day because for me it was par for the course.
That wouldn't be the last time anger and loss would motivate me to do something unbelievable but it's definitely a hidden part of how “I lost my mind long ago, down that yellow brick road” (Angus and Julia Stone, Yellow Brick Road). Fast forward twelve years to the professional world.
On May 14th, when I was 31, the seventh anniversary of my mom's overdose, I lost my job. The primary feedback I got was that I was underperforming. I'm not here to split hairs about that. But, it changed my life dramatically. I lost more than a job. It was also a community, a home, and part of my purpose at the time. In ministry, your job is a lifestyle. The lines are blurry between work and life. Even if you maintain good boundaries, it's hard to get around that blending of life and work because who you are and what you believe helps drive the mission. It's one of the biggest and hardest losses of my life.
Like the injury years earlier, I was feeling the grief and the anger, both of which fueled the next chapter of my career. I started a new career at entry level, which was below the pay scale I’d been at by a fair amount. Within five years, I went from the front door to the director's chair because I was fueled by what I'd lost from ministry. My library career has been a better and more rewarding fit for me than ministry, which is ironic because the work isn't that different. I don't usually talk about this because my goal has been to rebuild my career from the ground up and I did just that.
Carrying the weight of knowing that your life can and has changed at any given minute, and sometimes that's based on someone's opinion that you can't do anything about is a lot. I work hard not only because I want to do a good job at what I do, but because I don't really know what's good enough for you. Some of that is the hidden impact of complex trauma and some of that is the hidden cost of having a disability. I'm simply looking to exist and have my basic needs met. I've had to work my ass off to do it. I've had to pretend that it doesn't bother me when it does. I've had to push through fatigue and pain because what's enough for me isn't enough for some, and sometimes those “some” are the ones deciding if I have a job, a place to live, and a community to be a part of. That's beneath the surface every day and takes a lot of work to manage.
Perhaps you're thinking, Tim, these are rough experiences but what do they have to do with disability? In the first scenario, with the hand injury, I was expected to accept the dim results as though they were acceptable. That happens with a lot of things for me. I want more than the minimum. I don't just want scraps. I'd like equality with others. In the work scenario, I'm not allowed to be content and be enough for others. I have to push myself to or beyond my limit all the time. If I am doing what feels like my best to me without having to overexert myself, others perceive it as laziness. In reality, it's just my physical baseline. The hidden impacts of disability can be the limits you don't see, the fatigue you're unaware of, or the non-disabled expectations you have that I have to meet or exceed to be enough.
For a decade now, I've grinded and worked tirelessly to achieve my spot at the table. There's not a part of my body that hasn't paid a price for the constant pushing. There's not a day that the sadness of all that I've experienced and lost doesn't touch me. Both of these things are present all the time. Ultimately, I have a better career now. But, I went into ministry because I could physically do the job and I thought it was the right job for a person with a disability because Jesus says that you're welcome as you are. No, I wasn't. Just like everywhere else, I had to perform for others. If you're thinking, that's just work, you might be right but what happens when your entire existence is performative because your state of content isn't good enough for the people around you? It's not just about that one moment in time. It's the internal message that it's okay for me to accept less because I am less, I'm not enough for the world because I am worth less than you. That's one of the many hidden costs of being disabled. Not only do I have to guess if I'm doing enough by your standards, I have to work to overcome the internalized ableism that comes with it.
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