Most of Us Will Be Disabled Eventually. We Need Real Disability Benefits.

Life can be challenging even when you’re born into the best of circumstances. When you’re born with a serious disability and into poverty, it can be even harder. But there are policy choices that could make life a little easier for millions of Americans like me — and anyone else who lives long enough to need care.

I was born with cerebral palsy to a young mother caught in a brutally abusive relationship with a man who wasn’t my father. My early life was traumatic, but I’ve done my best. Even after an accident left me permanently bedridden and in continued poverty, I’m finishing up my college degree online and just received my first job offer.

I’ve survived because we have a safety net in this country. But I haven’t thrived. I remain in poverty, hungry, and without sufficient care, because our safety net has been shredded by massive disinvestment.

I pay the rent with the help of disability benefits, but little is left over. I receive Supplemental Nutrition Assistance Program (SNAP) benefits to eat, but my benefit runs out nearly two weeks before I’m eligible for more food. Like millions of Americans with limited benefits, I struggle with hunger later in the month.

Because I’m impoverished by my unfortunate circumstances, I’m also eligible for Home and Community Based Services under Medicaid. These services are crucial but limited — I need more care than I can receive.

I had a terrible incident recently when the remote control on my at-home hospital bed broke, leaving me in an excruciatingly painful position that I couldn’t get out of. I got this bed through Medicaid five years ago — the length of time after which Medicaid transfers responsibility for its repairs to the patient. So they wouldn’t replace the remote control or fix the manual option, which was also broken.

For their part, the medical supply company sent a worker who simply looked at me and said it looked awful, but there was nothing he was authorized to do that could help me. He left me in my dangerous and painful position.

During this time, SNAP sent me a letter that my assistance would be terminated for failure to complete certain forms, of which I was unaware. The constant stress of simply getting minimal help and food is debilitating. It’s a way of life for those of us with unfortunate circumstances beyond our control.

We are stigmatized and told we’ll be fine if we simply “manage our money better.” Managing money would be a blessing — it would mean I have some. Even now I’m hoping to start a job, but I fear that if I take the part-time student job I’ve been offered, I’ll lose my benefits and not have enough money for food and health care.

But it doesn’t have to be this way. Benefits programs work — they’re just under-resourced and over-restricted.

The extremely tight eligibility requirements for some programs don’t allow us to have more than a tiny income, any assets, or even to marry without assuming a partner will take care of us. Yet other programs also have work requirements, and we’re shamed for wanting to marry without losing our benefits.

Meanwhile, government resources go to huge windfalls for the wealthy and corporations, and we’re told to be patient while their wealth trickles down to us. We’ve been waiting for 50 years, and it hasn’t happened yet.

We must fully fund comprehensive care for people with disabilities and the elderly so we can thrive at home with the services we need — so we aren’t neglected, hungry, or simply left in pain to die.

Eventually, we’ll all need care if we live long enough. Those of us with disabilities deserve the same chances to be healthy, happy, and productive as able-bodied people.

This piece was originally published on our sister site OtherWords.org.