Dear Activist Comrades,
Over the past year or so, I have been Baba Baxter Jones’s live-in caregiver, and have also had the privilege of being present as his friend, engaging in many in-depth conversations about activism, ableism, and much more. I’m writing this letter to share some of what I have learned, and hope it can be useful to y’all.
I was born in 1963 and have been an activist and organizer since the 1980s, working on campaigns to end wars, support women, dismantle racism, and much more. I moved to Detroit in 2013 from Milwaukee, WI, largely to be near Mama Grace Lee Boggs, and to join her caregiving team.
However, not until this past year did I really begin to understand and confront the depth of my ableism (bias against people who are differently-abled). Similar to my feminist and racial awakenings in my 20s and 30s, recognizing my inner ableist has been extremely uncomfortable and disconcerting, and, to be honest, I have fought it every step of the way. The very same way a racist person clings tightly to their prejudices, I clung tightly to my ableist way of seeing things.
It took 6 months of living day in and day out with Baba Baxter for me to begin recognizing how much I was imposing my ableist standards on him. For these first months, I constantly argued with him about why he did things the way he did. After all, I raised 3 kids, was married for 26 years, and ran households and organizations. I knew how to do things. Why did he want things done differently? Why couldn’t he see the logic and sense and efficiency of my methods, and comply?
What I failed to do was fully understand his experience as a Black man living with severe disabilities.
It took me months to understand the depth of his vulnerabilities and disabilities. Baba Baxter comes across as a robust, outspoken social justice warrior. He IS that person, but there is another side to him that he doesn’t indulge frequently, publicly nor privately, as a PSWD (person surviving with disabilities).
Baba lives with chronic pain, resulting from his 2005 car accident, and subsequent injuries since then. He doesn’t like to talk about his pain, because he says it makes it worse to focus on it. However, since I have been caring for him, I have been insisting that he tell me, so that I can take measures to help him alleviate the pain. Sometimes the pain is so bad he cannot get out of bed. He avoids taking pain meds because he hates the side effects, but is occasionally forced to. The chronic pain, which includes frequent headaches, prevents Baba from being as active as he would like to be, and can be preoccupying to the point that he cannot check anything off his to-do list. “Simple” things like returning phone calls sometimes cannot be completed. Disabilities can range from mental to physical, temporary or permanent, or severe or mild. Like others with chronic pain, he has good days and bad days, cannot predict what his condition will be, and must adjust daily.
Baba Baxter also is a survivor of Traumatic Brain Injury (TBI). Even though he seems cognitively capable in many ways, there are gaps that show up regularly. He has been diagnosed with early onset dementia, and he has short term memory issues. He also can become quite frustrated, irritable, and confused, and has lost some of the coping skills he used to have before his injuries.
For these reasons, expecting Baba Baxter to do what able-bodied folks take for granted, like keep track of several calendars, keep up with emails and texts, return phone calls, meet deadlines, and other organizing tasks, without assistance, is unrealistic. Baba’s POV as a disabled person is invaluable and absolutely necessary to the community, but to ask him to function independently instead of INTERdependently is ableist and unreasonable.
In this day and age, we are rightly expected to ask for what we need. Baba Baxter is very experienced at asking for accommodations, but it becomes extremely tiresome, and sometimes he simply does not have the energy. It’s the same way POC get fed up trying to educate white people. Baba gets tired of painting himself as a “victim” and talking about what he has difficulty doing and what he needs, only to experience the same responses over and over. He gets frustrated because people apply ableist standards, about how and when things should get done, and fail to adapt plans to make accessibility a priority.
Furthermore, there’s a way in which we consciously or unconsciously attack PSWD, even in our movement spaces. Just the way the Nazis found PSWD threatening to society, we feel irritated by the presence, participation, and inclusion of PSWD. The accommodations they need are cumbersome, and their struggles come across as shortcomings, that resemble incompetence, weakness, inferiority, selfishness, or laziness. We have been trained in the culture and language of “equal rights” without necessarily being steeped in building equity. We don’t want to give someone extra help, and actually we could use some ourselves. In a culture that emphasizes INdependence instead of healthy INTERdependence, it makes us wriggle to see someone who is “needy.”
Sometimes we regard Baba Baxter as a thorn in our sides, because he’s always challenging us to do better, and be more inclusive, accommodating, and accessible. It’s human to react with defensiveness when we’re asked to go beyond what we perceive as reasonable, or what we’re used to. Sometimes in such situations, Baba Baxter ends up being a target of conscious or unconscious antagonism and hostility. When we antagonize PSWD, we deflect attention from a lack of accommodations to victim-blaming. Instead of taking responsibility for adapting conditions for greater accessibility, we may want to blame PSWD, for creating difficulties themselves.
I ask everyone receiving this to read this with an open mind and heart to uncover your inner ableist (no one in the world is exempt, including PSWD themselves), and be utterly honest about the range of feelings you experience in the presence of PSWD, and how your actions are shaped by these feelings. This is NOT to shame nor blame, but to help us understand how ableism works, so that we can dismantle it together.
I am aware that in Detroit, we have heard some of Baba Baxter’s requests many, many times, and some of us have become inured to them. Sometimes Baba Baxter’s requests are regarded as bothersome, or too much to ask, too difficult to fulfill. I understand this completely, and often feel overwhelmed myself. Yet, I have come to realize that Baba’s requests are not unreasonable; it’s the way our society and systems are set up that are unreasonable. For instance, it’s not at all unreasonable to request accessible transportation. Yet, the ableist society we live in makes it extremely difficult and costly to arrange this. Why do we allow bus and van companies to charge more money for accessible vehicles? If demand continually exceeds supply, shouldn’t transportation companies purchase more accessible vans? Aren’t these ableist policies? As activists, we must be the change we wish to see in the world. If we do not demand transportation for all, who will?
Creating an anti-ableist society requires creating a new culture of inclusion. To wait for PSWD to come forward and demand accommodations before we take the trouble to arrange it, is an ableist practice. That’s like a university saying, “We will create a Black Studies Department only when we have enough Black students who are interested.” No, the university should create the Black Studies Department anyway, because it’s the right thing to do, and very likely, will eventually attract the Black students to support it. Instead of saying, “we will have ASL interpreters if hearing-impaired attenders pre-register,” we should have ASL regardless, because it’s the right thing to do in creating a culture of inclusion. If our organizations provide accommodations, it sends the signal to PSWD that they are welcome. Why do so few people in wheelchairs show up at rallies, demonstrations, and direct actions? It’s not because they are disinterested. It’s because they don’t feel welcome, supported, or included. It may not have even occurred to them that they could come. Baba Baxter keeps showing up only because he is a born fighter, too stubborn to be deterred.
All of this is to say that I believe ableism is the deepest and most difficult to uproot of the “–isms,” because it addresses our most basic issues of survival and dependency regarding life and death. Being with Baba Baxter means confronting our own fears of dependency, pain, and disability. If we are lucky enough to live long lives, we will all face some level of disability. Officially 20% of us in the USA are disabled, but I believe this is a low estimate, due to our ableist shame that prevents us from admitting we have a disability, which could include mental illness, chronic illness, and more. If we can come to terms with our own disabililties, we can begin to dismantle the inner ableist, become more welcoming of other PSWD, and demand the accommodations that we each need and deserve.
I hope this gives y’all some food for thought. Ultimately, this letter is not about Baba Baxter, but about all PSWD, and making our movements stronger for all. I offer this in love and struggle,
gwi-seok
(Peggy Kwisuk Hong)
PS here are some excellent resources for recognizing and dismantling ableism:
