“You Have to Work Until You Die” and Other Barriers to Self-Care for People with Disabilities

OFF-KILTER with Rebecca Vallas

This week, Off-Kilter continues our ongoing series of conversations with social justice leaders digging into why, in the famous words of Audre Lorde, self-care is political warfare—and the role radical self-care plays in their own lives to sustain them in this work. As we’ve explored a good bit in recent weeks as part of this series, the disability community harbors some of the greatest wisdom when it comes to radical self-care—with disabled people as modern-day oracles, as activist Alice Wong often puts it.

For this week’s episode, Rebecca sat down with Keith Jones, a longtime disability rights and justice activist, cofounder of Krip Hop Nation, president and CEO of Soul Touchin’ Experiences, and a visionary thinker when it comes to approaching social justice work itself as a form of radical self-care for the collective. As Keith puts it: “In order to build a stronger community, there must be a heart and soul commitment to those who need assistance in order to begin caring for themselves and in turn caring for others.”

They had a far-ranging conversation about one of the most significant barriers to self-care for people with disabilities: asset limits and other backwards policies that make “work until you die” the default retirement plan for a huge swath of the U.S. disability community; what it looks like to enter social justice work from the starting point that “everything has a soul”; how Keith has woven together hip hop music into his disability activism through Krip Hop Nation; and more.

For more:

• Learn more about Keith’s work with Soul Touchin’ Experiences, Krip Hop Nation, and follow him on twitter @dasoultoucha

• Learn more about why “work until you die” is the retirement plan for so many disabled people in this op-ed by Rebecca Cokley