Every week, to confront old wounds and maybe even heal, I open my mind so that my subconscious can bring memories to the surface. I feel the emotions there, recall the senses and meditate on how they drive me today. Then I release them.
Yesterday I meditated on humiliating experiences, inviting shameful memories to flow freely. Strangely, many of these memories circulated around acts of love: people reaching out, providing, sharing, caring. People wanted to like me, but I was mostly ashamed.
During a presentation on ableism, a participant asked me to summarize in one sentence the experience of being sick and deaf. From deep within me came my answer: “Being disabled is like being a burden.”
Being disabled requires dependence on the able-bodied. We are deprived of a lot of autonomy and dignity. I remember a series of colonies revolting for their independence, but frankly most disabled people don’t have the energy for activism and revolt, nor do we have the means to survive without the help of others. And so we feel like charity cases in a society that demands thanks for accessibility presented as a gift rather than a right.
We feel like parasites on the loved ones who fund us because we don’t have the energy to survive independently in a society that says effective insurance belongs only to those who prove their worth in work. We feel like we’re spoiling other people’s fun because we have to “collapse” from fatigue or because they always have to consider our health limits. We feel pity, and when that pity runs out, we crave it.
So we ignore our needs, our limits, our value. We give, give, give, because we always feel like we’re paying off our debts, deflecting scorn, or proving we’re worth keeping. When I talk to people with disabilities, I often learn that despite unfair healthcare costs, they insist on paying for other people’s meals, that they are the go-to friend for advice, or that they feel the need for to be the funniest or the most charming so that others do not feel uncomfortable because of their suffering.
But there comes a day when our health collapses. Or a day when we become bitter that we always give and never receive. In these situations, when we need help the most, we feel shame, fear and exhaustion. We feel trapped. And yet we will find that we have rarely allowed anyone to truly help. We set that tone in our relationships.
When we finally sound the siren for help, we find that many of those we gave ourselves have shockingly disappeared. The people who said they would always be there for us didn’t alert us to the fine print warning: “Except when your illness frightens me.” Is it any wonder that so many people with disabilities are afraid of being abandoned?
When I shared this with a friend, he said he would never give up on me. Pain, I spat he was a liar. “You don’t know that. Others have said the same thing. But I don’t know what would happen either. What if he was really there? If so, I shouldn’t chase him. People like him definitely won’t be here…if I don’t let them.
The are those who see in us our despair of being loved despite the handicap. They drive us, insisting that we are not loved for what we do, but for who we are. They help us—perhaps even force us—to receive, and they can even make it easier for us. They teach us to trust again.
A lot of people are disappointing. But if we open ourselves to receiving love, perhaps some will surprise us in the most delicious way. The population with cystic fibrosis is aging. Our friends grow with us.
I go back through my memories: My pastor superimposed affirmations on me while I begged him to shut up because I didn’t believe him. A friend hugging me and refusing to let go as I sobbed from my hearing loss. My mom was crying on the phone making infuriating insurance calls that I couldn’t because of my deafness. My friends threw me a surprise party when, in my depression related to failing health, I had cut myself off from them. My anger at a physical therapist who grabbed my arm when I lost my balance. My father’s friend brought meals while I was in intensive care. Dad wiped my ass when I was too weak to do it myself. My sister played with my sweaty hair after I said cruel things to her back when I almost died.
These people don’t have scorecards in their pockets. There is no debt. They saw me suffer and they were compassionate. “Compassion” translates to “to suffer with”. It is a painful but pure love. It’s when vulnerability meets vulnerability. There is no time when we are more human than when we share the suffering of others through sacrificial solidarity.
I don’t want to be pushed away or afraid of love and tender care. I won’t let my shame steal another good thing.
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