Oppression hits people in a number of different ways, especially when it’s internalized. I call the force that prevents me from being true to myself “The Ghost of Ableism.” In the past few years, the ghost had stopped visiting me so much, but when I moved recently to Santa Barbara for my new job, the ghost returned. It now fills my head with messages like “Jake, don’t be a burden” and “Dude, let that person’s ignorant comment go.”
Just last week, I rode the evening Greyhound bus as it slowly made its way down Highway 101, and that ghost stared back at me from the darkened window. The bus was supposed to arrive at 8 p.m., plenty of time for me to walk the half mile to the city bus station to catch the last bus home at 9:30. But the bus, not unusually, was late. How was I going to get home? I held the ghost at bay and surveyed my tiny Santa Barbra contact list. “Who wouldn’t mind a text interruption?” Three were people who hadn’t been enthusiastic the last time I’d asked for help, but, among the others, my first two texts yielded results.
Sue said she’d pick me up, but she lived 40 minutes from the bus stop and would have to get off work before she could borrow her roommate’s car. Brad also responded; he couldn’t make it, but he offered to give me $20 for a cab.
I’d only known Sue and Brad for a month, and I wanted the connections more than I wanted the help. So, I decided to take a cab to the bus station from Greyhound. It worked. I got home and even stopped to pick up orange juice for Monday’s breakfast, but I was exhausted.
Now, the ghost is a big believer in independent living, and it was happy because I had relied only on myself to solve the problem.
Many people with disabilities find it challenging to ask for favors. I find it hard to tell when I am asking for too much help or if my requests are unreasonable. And it’s difficult to get honest feedback to calm my anxiety. Very few people will tell you straight out, “You are asking for too much.” Instead, when they get tired of helping, they simply delete your email and don’t return your calls. To maintain my friendships, I decided to ask for no more than one favor a month. When I tell my friends about my policy, they often say, “Jake, that’s stupid. You can ask for anything.” What can I say? That’s not my experience. But it’s not like this for everyone.
My neighbor is a middle-aged man with a disability who has no qualms about asking for favors, even at 6 a.m. on a Sunday morning. His friends, or “team,” as I call them, never seem to mind. In the past four months, they have brought him a TV, computer, and a new bed. It boggles my mind to see them so generous. His team is mostly composed of people from his work, and maybe he saved the company once or something. Or maybe they simply are the biggest supporters of independent living ever.
All over Santa Barbara, groups of people rally around a person with a disability. A few months ago, my neighbor was in danger of losing the Section 8 voucher that helps him pay the rent. While the team and I were talking daily to remedy this situation, my neighbor stayed calm as a yoga teacher.
I wish I could do yoga while a team handled all my affairs, and for a while it seemed like “Team Jacob” would form. Then the ghost of ableism stepped in and suggested that I resist because I didn’t know how long the team would last. “Santa Barbara teams can be overwhelming,” the ghost said, and it pointed out that I like to have some privacy. One of my friends is trying to break up her team because they intrude too much in her life.
When it’s harder for me to find help with rides and other favors than in my hometown of Oakland, my ghost tells me not to complain, that I can get around just fine, and besides, I am new to this community. However, when my little ghost (and big independent living advocate) takes his lunch break, I notice. In the Bay Area I was spoiled rotten with rides. Here, I haven’t been able to crack the ride code. One person, who asked me if I needed a ride home, withdrew her offer when I told her that I lived a half-hour away by bus. “Oh, you will be fine walking,” she said, patting me on the head. Another time, I was walking downtown and tripped on the sidewalk. An acquaintance stopped to help me up. When I asked her for a ride to my meeting three blocks away, she hesitated and finally drove me one block, leaving me to walk the other two.
Walking into a meeting with bloody elbows makes you appreciate getting a ride. It’s new to me to be a paid representative of a disability organization. Because of this, and my little ghost, I don’t show the disappointment I feel when I can’t get a ride or other small favor. I also haven’t yet figured out how to respond to difficult situations in a way that won’t put me or my agency in a negative light. I want to yell at the person who said she didn’t understand how I could live independently and take the bus by myself. Same for the teacher who said, “Our [disabled] students don’t go to college, so why bring it up?”
However, when I’m angry, the ghost of ableism visits. “Now, Jake, be nice,” it says. “You don’t want to insult a potential ally, do you? Use that grad school language.” So I either let the ignorant comment pass or string together a long and wordy lesson on why a statement is problematic. Of course, with my cerebral palsy accent, few people have the attention span to listen to my long and wordy explanation.
The ghost of ableism also tells me that I need to make a good impression in a group. “Folks here don’t know many people with disabilities, and you have to represent the community,” whispers the ghost. Of course, this not true at all, but in certain communities I feel tokenized and burdened with the task of presenting disability in a positive light.
I want to escape this unhealthy thought pattern and figure out how be true to myself while also being an effective community organizer. I want to be able to raise my eyebrow when someone says something insulting about people with disabilities and not feel like my doing so will damage my reputation and that of my organization. I want to explain to others that although I might like help after a long day, I don’t need them to sign up for “Team Jacob.” I want to bid farewell to the ghost of ableism once and for all.
Jacob Lesner-Buxton is the community organizer at the Independent Living Resource Center in Santa Barbara, whose mission is to promote independent living and full access for individuals with disabilities through advocacy and education, and providing resources in our communities. Lesner-Buxton has a disability called cerebella palsy; he loves to dance, travel, and watch bad ‘80s movies. For more about the ILRC, contact him at firstname.lastname@example.org.