This February, Jewish Family Service of the Lehigh Valley presented two virtual programs for Jewish Disability Awareness, Acceptance and Inclusion Month (JDAIM). The second event, “Disability Pride vs. Disability Fix,” on Feb. 28 featured three panelists, all members of the disability community.
Dr. Joseph Stramondo, an assistant professor of philosophy and associate director of the Institute for Ethics and Public Affairs at San Diego State University, gave a bioethical primer to lay the groundwork for some of the questions that were raised during the program. He addressed the ethical and political problem of which should be prioritized as the answer when it comes to disability: pride or cure? He explained that while the common view is that when possible it is better to cure a disability rather than accommodate it because it theoretically eliminates more suffering in a more permanent way, it is more cost-effective and is fairer to the valid interests of non-disabled people.
The common view among disability activists is actually that it is better to accommodate a disabled person with environment modification and assistive technology (AT) because it eliminates suffering without reproducing social stigmas and regards disability as a valid identity rather than a problem. Stramondo then outlined the differences between AT and CT, or curative technology. Curative technology is something that permanently leads a person away from disability, like a cochlear implant for hearing impairments. AT is something like using a wheelchair. His thesis was that AT confers the group identity of disability on the user while CT moves them away from that group identity.
“Why reject the magic cure pill?” Stramondo asked. “AT instead of CT preserves an aspect of individual identity that a person many find valuable or important. It can also preserve group cohesion or culture. And it sends a message. If eliminating disability sends a message about a person’s, group’s or society’s values (i.e. eugenics), then preserving disability may also send the reverse message.”
The next presenter was Michelle Kraus, senior social worker for the Disability Justice Program at New York Lawyers for the Public Interest, a non-profit law office serving different communities in need of advocacy and legal representation, and director of advocacy and public relations for Little People of America. She shared how these philosophical questions Stramondo introduced become real for her organization.
“Advocacy has become a very strong arm of the organization,” Kraus said. “We started out as just dwarfism awareness but we’ve grown to be more directioned in disability rights. We’re not only an inclusive club, we are a force with a voice.”
Lastly, Rabbi Dahlia Kronish, the high school associate head at the Abraham Joshua Heschel School, shared her personal story, from growing up in a nurturing family in Israel to starting one of her own in New York City.
“In high school, I wanted everyone to say, ‘I barely remember that you're different,’” she said.
Now, as a parent of two boys who share her achondroplasia, she is thankful for the organization that allows them to be around others like them, but has also decided not to enter them into pharmaceutical trials which might make attempts at “curing” them.
After the presentations, Kraus moderated a discussion with questions posed to Stramondo and Kronish from herself and the audience of over 60 participants. They ended with weighing in with their opinions on how individuals might use technology and still publicly express – or not-– disability pride.
JFS Executive Director Debbie Zoller summed up the evening’s goal of raising awareness.
“This was a great dialogue, and we probably came away with more questions than answers, but that's OK. We’re all searching,” she said.