Tag Archives: SSI

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?


Disabled, Giving Back

I was visiting a food bank in DeKalb County, Georgia when I met “Jane”. At first I mistook her for a client – she was watching me out of the corner of her eye, and kept hanging around the edges of the conversation I was having with the director of the program.

As I left she caught up with me and asked if she could share her story. In her former life she was a figure skater, teacher and judge, and also worked as a japanese translator. She owned  her own home and car, and enjoyed a typical middle class life. Then one day she was bit by a tick and developed Lyme disease.

During the process of being diagnosed she tried desperately to find her birth mother, in order to get detailed family medical history that might help with her diagnosis. Though she was ultimately successful, it was a laborious and costly process she believes should be streamlined in case of medical need.

Her health has steadily declined, to the point where she has now lost most of what she had, and is living on SSDI. She has a service dog who can sense when she is going to have seizures, providing her with safety, piece of mind, and companionship. The costs of the service animal are covered by SSDI.

Jane finds living on disability and food stamps humiliating and demoralizing. She has come to terms with her disease, but it is doubtful she will ever come to terms with how she is treated, whether it is at the grocery store or the doctor’s office. Because here disability is invisible, people assume she is gaming the system, and treat her accordingly. She often has to defend her right to use a service animal; people see only a woman with a dog, not a disabled person with a lifesaving service companion.

Despite all the setbacks in her life, though, Jane has found ways to stay busy, volunteering a considerable number of hours every week at food banks, homeless shelters, and soup kitchens, just as she did when she was affluent. Though she is frustrated by the fraud and abuse she sees every day, she continues to volunteer because it inspires her to get up and out of the house, and she feels good when she helps those who are legitimately in need.

This attitude, and approach, to charity, I found most pronounced in the South, where I kept meeting people who were very active in their charitable giving, be it in their churches, their schools, or in non-profits serving various causes. Churches especially  do a remarkable job of coordinating charitable activities, including providing food, shelter, housing and social services.

Part of this journey has included the inevitable discussions about how to replace the welfare ‘state’. Some argue that the poor, mothers and children, and the disabled, will fall in to abject poverty, but having seen the vast network of private charity at work nationwide, I dispute that notion.

After all, when welfare appeared on the scene, replacing private charity with government-provided care, charity didn’t disappear. I wonder what would happen if welfare programs were reduced dramatically and communities returned to taking care of their own. Certainly the likes of Jane lead me to believe Americans would pitch in and take care of each other, regardless of their status in life.