Am I a burden? (Another flashback photo, Jason and I in Yosemite 2017)

Thoughts of being a burden on your partner, a burden on society or loved ones, often streams through disabled minds including mine. Being different often makes one feel unworthy but this is amplified when it’s perpetuated by society...and they’ve been good at telling us how damaged and burdensome we are.

I’ve mentioned the difficulty of disabled dating in able society but it doesn’t stop there. After you find a mate you have to tend to prying eyes and justify your status as a loving partner, not a burdensome object of care. Able bodied people also love telling us we shouldn’t have children cause we’ll ruin their lives, a thought that suffused my mind when I was considering children — something I always wanted. This was before I knew what ableism was.

It’s not uncommon for strangers to look at Jason with doey star-filled eyes and congratulate him for being such an honorable saint to take on little disabled me. For the longest time strangers would address Jason as my brother which was confusing for awhile, until I realized it was common for able-bodied people to be shocked that a disabled person could find a loving partner.

People look at us and only see burden and heroism, they don’t see us as a normal couple that benefit each other. Instead, all the ignorant ableist thoughts enter their mind like, “They can’t walk, they need help with everything, they can’t have sex (pssst, I can and I like it very much), so how can anyone love them?”

Onlookers confine their world based on shallow extrinsic values. Their clouded thoughts lack imagination, insight...humanity and I’m forced to shrink down into my chair every time a stranger addresses Jason on my behalf as if I can’t think, feel or talk for myself. I’m forced to feel subhuman every time a stranger, family member or friend first meet Jason, who is obviously the saint in the relationship — worthy of praise and admiration as they tell him how amazing he is to be with someone like me and then turn to me and say how lucky I am. This isn’t untrue, I am lucky. But it’s the ignorance and superiority complex behind it that gets me.

Today, I see a lot of interabled advocates speak up on this pervasive yet harmful thought. I love this modern message from the able individual of an interabled relationship saying, “No, my disabled partner is not a burden.”

It’s very difficult to feel like a burden, and many would rather die than be one. But ableism has permeated disabled minds and even I often have to ask Jason, “Am I a burden?” or “Do you regret marrying me?”

Jason is always stunned when I ask this but I believe him emphatically when he tells me he’s NEVER thought of me as a burden. He poignantly wonders if parents think their children are burdens because they need help, and says if the able counterpart in a relationship views their disabled partner as a burden then there’s other issues because when you love someone such thoughts don’t come up. In difficult situations Jason says he thinks of how hard it is on me, not him, and places frustration on the disease, not me.

Now Jason and I are very open. We can talk about anything and everything. It’s one of the intimacies derived from being disabled as Jason and I are intertwined all day long because I need help with everything. But people only see that I need help. They don’t see our joking banter on daily recycle while doing the mundane like going to the bathroom or showering. They don’t see me playfully singing terribly and creating silly songs just to make Jason laugh while we shower. They don’t see that I basically handle all the affairs required, from finance, scheduling and organizing our lives. They don’t see my mind, my humor, my accomplishments nor my empathetic heart. They don’t see any of it.

When I’m feeling inadequate, as my list of needs grows, Jason likes to remind me that before me he had very low expectations for life and figured it would be typical and boring. But it’s me who taught him how to live and care for others. It’s me who taught him passion and challenged him beyond what he ever thought he could be. Are these not values or merit? Or is my worth as a partner, as an individual, limited to whether or not I can take myself to the bathroom or walk?

I’d like to think I added something to Jason’s life beyond being a “burden”.

I know Jason doesn’t see me as a burden and that means the world to me because I don’t get that with a lot of people. Yes, I need help going to the bathroom and feeding myself is becoming a chore but I do a lot and so does Jason. We divide and conquer like any couple.

All of us are limited in some ways with our own problems, confines and mania, but for disabled our alleged limitations are on full display for the general public to pity us, then savor the fact that thank goodness it’s not them and then push us back to the back when it comes to being hired, being seen or being a partner.

I know all this. I know how to evaluate people that extends beyond the confines of most people’s evaluation list. But on a bad day I can still feel like a burden. On a sane day I know my worth as a partner. I give a lot, and it’s up to us to broaden what constitutes worth, and for me walking isn’t on the top of my list when I “see” people.

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