Blue said she likes synthesis, so I thought I’d post about some uncomfortable similarities I’m seeing between her description of the “Jerry’s Kids” phenomenon and volunteer contributions to Africa as described in this New York Times article, which Hysterical Blackness linked to a few days ago.
Blue’s post is about a controversy about the public face of people with muscular dystrophy in the context of appeals to philanthropy. Controversy is perhaps overly generous; few people within the disabled community, and indeed few organizations dedicated to spreading awareness and access, disagree about the most just approach. Of course, this is not true of society in general–read Blue’s post for a sample of depressing comments about the right of disabled people to demand respect rather than pity. The controversy is over one charity, and largely centered on one spokesperson:
The first MDA Telethon in 1966 was hosted by Lewis and covered by a single New York City television station. As the main fundraising event for the organization, the Telethon uses “poster children”– now called “goodwill ambassadors”– to advertise the diseases of MD, their effect on families, and the need for money for medical research.
Irate former poster children nationwide began to speak up that their roles as children had been demeaning belittling experiences, that Lewis perpetuates the disabled person as pitiful and childlike, and that the charity mentality directly undermines the empowerment and equality the disability rights movement works toward. Cris Matthews and Mike Ervin, brother and sister and former poster children in Chicago, formed a group called Jerry’s Orphan’s. Matthews wrote to the MDA:
“Much attention is given to the kids who may not live to adulthood, but for those of us who do live on, not one word or one dime is devoted to the concept of independence…. No one is negating research or the individual’s desire to be cured… [just] the attitude that stresses that, no matter what one does, life is meaningless in a wheelchair.”
The battle has continued, with the MDA and Jerry Lewis staunchly refusing to give the former poster children the credit of speaking from their experiences. In 2001, Lewis stated:
“Pity. You don’t want to be pitied because you’re a cripple in a wheelchair, stay in your house.”
The “poster child” has a long history as a stereotype of disabled people; most popular representations boil down to “poster child,” “super crip,” and, “evil disabled motherfucker.” (See Javier Bardem, Christopher Reeve, and Ian McKellan for three recent examples.) Disability is either something that leaves you an object of pity with a pathetic half life, something that must be heroically overcome, or something that twists your soul into sociopathic perversity. It is rare to see a depiction of disability that doesn’t define the person’s life by the disability while at the same time making the experiential aspect of disability incompatible with quotidian existence. The poster child plays into this first stereotype of stunted helplessness; people with muscular dystrophy are depicted as helpless children rather than as capable adults.
Lewis’ refusal to differentiate between “pity” and “awareness,” or to accept that there are other ways to fight invisibility besides self-sabotaging appeals for human fractions, are offensive both to disabled people and to the disability-rights activists who have found other methods and succeeded by them. His insistence that pity is not problematic is patently ableist, given that prejudice against disabled people is most frequently based on the idea that their disabilities make them inferior people with inferior lives and inferior capabilities:
The MDA Telethon is one “genre” of how disabled people’s bodies are culturally used to define normality, safety, and bodily superiority of the nondisabled. Beth Haller explains the cultural place of telethons and the effect of opposition to them:
Culturally, the disability activism against the telethon has real ramifications for the ideology surrounding disability in U.S. society. Marilynn Phillips* calls a telethon an “occasion of ideology,” rather than an “occasion of social reality” in U.S. culture. Occasions of ideology invoke pity and charity in belief of a cure, whereas occasions of social reality summon feelings of resentment and confusion over the “abnormality” of people with disabilities. During occasions of ideology, discourse focuses on the “defect” of the person, and disabled persons are homogenized as one. Phillips says, “primarily, these are events which define culturally appropriate handicapped behavior (being a good cripple), and which serve to demonstrate predictable interactions between nondisabled and disabled persons.”
The pyrrhic appeal reminded me of an article I read about another pity-based appeal, this one on behalf of slaves (note: link chronicles some deeply racist depictions of black people, black children in particular, with pictures). The racist caricature of the foolish, animalistic, shiftless, half-wild, dirty black child predates Harriet Beecher Stowe by many years. Its antecedent prejudices are inseparable from the very concepts of racial inferiority, white supremacy, and white-supremacist eugenic paranoia. She might, however, have been the first one to invoke the stereotype on behalf of social justice:
The first famous picaninny was Topsy — a poorly dressed, disreputable, neglected slave girl. Topsy appeared in Harriet Beecher Stowe’s anti-slavery novel Uncle Tom’s Cabin. Topsy was created to show the evils of slavery. Here was an untamable “wild child” who had been indelibly corrupted by slavery.
She was one of the blackest of her race; and her round, shining eyes, glittering as glass beads, moved with quick and restless glances over everything in the room. Her mouth half open with astonishment at the wonders of the new Mas’r's parlor, displayed a white and brilliant set of teeth. Her woolly hair was braided in sundry little tails, which stuck out in every direction. The expression of her face was an odd mixture of shrewdness and cunning, over which was oddly drawn, like a veil, an expression of the most doleful gravity and solemnity. She was dressed in a single filthy, ragged garment, made of bagging; and stood with her hands demurely folded in front of her. Altogether, there was something odd and goblin-like about her appearance — something as Miss Ophelia afterwards said, “so heathenish…” 2
Note that Topsy’s subhumanity–which Stowe does not challenge–is directly connected to her skin color; she is “filthy,” “heathenish,” “goblin-like,” and “one of the darkest of her race.” Stowe also sees no problem invoking minstrel caricatures to describe Topsy’s body, face, and hair, or with pathologizing them. This description is not merely about the effects of the crushing poverty and vicious cruelty that result from racism and slavery, but about race: this child is the result of the cruelty of slaveowners and the natural vulnerability of slaves to savagery. Stowe is invoking pity, not respect nor commonality.
The article goes on to note how little of a challenge this depiction posed to racist attitudes–how can it, when it concedes the inherent inferiority of one race to another?
Stowe hoped that readers would be heartbroken by the tribulations of Topsy, and would help end slavery — which, she believed, produced many similar children. Her book, while leading some Americans to question the morality of slavery, was used by others to trivialize slavery’s brutality. Topsy, for example, was soon a staple character in minstrel shows. The stage Topsy, unlike Stowe’s version, was a happy, mirthful character who reveled in her misfortune. Topsy was still dirty, with kinky hair and ragged clothes, but these traits were transformed into comic props–as was her misuse of the English language.
Compare the possibilities Stowe implies for Topsy’s life with those Lewis imagines for a child with a disability:
“I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person. I may be a full human being in my heart and soul, yet I am still half a person.”
Lewis and Stowe are correct that pity cannot coexist with a belief in equality or the right to self-determination. Pity is something that you can only feel for a helpless inferior. It is less complicated than compassionate respect, and sometimes easier. But as Blue said, it permanently locks the people being served into that inferior position, and reverses the idea that prejudice is an evil in and of itself:
Equating pity with compassion, the choice becomes either to be looked down upon as a lesser being or to be ignored completely. The pitiful people in wheelchairs are cast as receivers of help who must simply sit and let others help them, if they’re nice and deserving. The idea of empowerment and access to participate in one’s own well-being isn’t recognized as an option.
It is also unreliable, and in fact has a tendency to slip right back into apathy or even hatred when much is demanded of it:
“It’s sad that those poor unfortunate persons with disabilities hate the man who tries to help them. True, he’s made mistakes. True, he can be an ass at times. True, he’s the only person in the world who is NOT perfect. lol It must be hard to be spiritually disabled and bitter on top of being physically disabled. I have a wheelchair-bound son-in-law. He hasn’t let his disability turn him into a hateful ingrate. I pity you poor souls.”
The New York times article showcases a similar phenomenon on the part of some aspiring philanthropists:
Those newly interested in the continent have been motivated by different atrocities. For some it has been the genocide in Darfur; for others, AIDS orphans. But regardless of anyone’s specific interest, most people consistently describe being attracted by what they see as a clarity — both political and moral — in Africa’s problems.
“I ask myself, ‘Why Africa?’ Why am I not motivated by Iran or something,” said Genevieve Parker, a 17-year-old student at the Potomac School in McLean, Va., who just returned from a summer trip to Ethiopia where she helped install pipes for an irrigation system. “It’s just because I don’t understand what’s going on: who are the good people, who are the bad?”
In Africa, Ms. Parker said: “there are a lot of problems, but you can group them in together. I can organize Africa in my head, in terms of poverty, droughts, even governments.’’
That clarity is the clarity of the Jerry’s Kids exclusionary focus on a cure, which saves Jerry from considering things like invisibility and employment discrimination and punitive assistance regulations. Africa is a safer object of pity because Africa and Africa’s people are supposedly so abject as to be without adult complexity or national history or independent goals. There’s nothing to learn, nothing to contemplate. It’s not like, you know, Iran or anything.