Mom on Disability Wants to Leave a Legacy

“Julie” was my final interview in Decatur, and weeks later I remain deeply touched by her story.

What makes Julie’s story unique is that she is dying, of a rare and incurable disease, with a life expectancy of two to three years. What makes it more unique is the choices she is making with that knowledge in hand. Rather than sitting back and letting fate have its way with her, she is determined to shape her own destiny until the very end. That destiny, for Julie, means achieving what has become her life’s passion and goal: leaving her child with the memory of a mother who worked, and made her way in the world, and provided for her.

It is not going to be an easy road, because her way is blocked by the very system that should be helping her. Because she is on TANF, she is required to participate in workfare full time. But, because she is sick, she cannot work the full time schedule required of her, and there is no flexibility for women like her who want to work, but aren’t healthy enough to work full time. In her case, her physician has indicated that she should be on permanent bed rest.

Due to her illness, she will soon be put on disability (SSI). Once that happens, she will be forbidden from working at all – in fact, her doctor has already insisted that she can’t work, although she desperately wants to, and can do so, on her good days.

And so Julie has come up with by far the most creative use of disability benefits I have ever heard – and something policy-makers should hear about as they ponder the wisdom of SSI’s impediments to working. First, she is going to take business classes at the local college, so she can learn to run a small business. Then, Julie plans to take her disability payments, save as much as she can, and open her own in-home business.

That way, she can work her own hours, thereby insuring that when she isn’t well enough to work she won’t be fired. That way, her child will be able to see her mother working for their future, and hopefully be inspired to be independent herself. And that way, when she leaves the world  and her child behind, she leaves memories of a mom who worked to make their lives better, in the face of truly daunting odds.

While we can be thankful that there is a safety net out there for people like Julie we should also question its efficacy; if she wants to work, shouldn’t our goal be to help her do that, instead of relegating her to her bed?