poverty

Poverty is a stark reality for many, many people who are challenged by severe and persistent mental illness. If your illness is debilitating to such a degree that you cannot work, what do you do? What are your options? I learned first-hand in 2007 what having a mental illness can do to one’s livelihood.

In 2007 I had my worst breakdown. I stopped being able to function at work and to some degree at home. I could no longer work 45-50 hours a week and earn the only income my young son and I had. Our household was devastated. But even in that devastation I was luckier than most. I was making a good salary and had outstanding benefits. So when the symptoms of my mental illness became unmanageable, I had short term disability to fall back on. It wasn’t much, but it was better than nothing at all. It was a third of my biweekly salary, which kept food on the table, but I still had to borrow from family to pay the rent and other expenses. Most of which I was never able to pay back.

I was also fortunate that I was given social security disability on the first try. Most people apply three or four times before they get it and it can take sometimes years. For me it was different, by the time my short term disability ran out, the SSDI had kicked in. Most SSDI recipients receive less than $1k per month to live on. The amount is based in part on how much you are earning at the time you become disabled. How anyone is expected to live on this is beyond me. For those who are only eligible for SSI, the amount is about $700 per month. This drastically limits where they can live, how well they can eat and the general quality of their lives. So for those who think relying on the government when you are sick is a walk in the park, think again.

These limitations make it extremely easy for some ill-intentioned predators to take advantage of us. If we have be designated a payee, someone who controls how our benefits are spent, then we are at their mercy. They decide how much food we can buy, where we live (usually a group home or rooming house), and what we do with whatever is leftover when the bills are paid-if there is anything left over. They decide how many packs of cigarettes we can have for the month, if we will have access to public transportation and if we will have enough toiletries to make it to the end of the month. Mental illness or not, we are still adults and should be treated with respect and dignity. We should be afforded choice, not treated like children just because we need support managing our lives.

As I’ve said, I’ve been extremely fortunate. My payee was my sister who afforded me choice and never made a decision about me without me. As soon as I was able and she supported me in managing my money and my affairs. She encouraged me to make my own decisions and be self-sufficient. Her encouragement gave me the confidence to continue taking care of myself and my son.

But everyone’s experience is different. We who live with mental illness and are disabled or limited in how much income we can earn, have difficult choices to make. We often choose between meds and paying the bills. Amenities that many take for granted like access to the internet, personal vehicles, personal computers, or cell phones are often out of reach. I’m really talking about the quality of one’s life on a day to day basis.  Just being able to go to the movies or take a day trip or get your nails done are more than some of us can afford.

This life of lack, where sometimes even the basic life necessities are absent certainly has an effect on our mood, our symptoms, out stress levels and our ability to cope. Add to that the never ending hoops we have to jump through to maintain our cash and medical benefits from SSI and SSDI. Random reviews of our medical conditions to make sure we are still sick enough to receive benefits. Limitations on the amount of income we can earn when we finally get to a point that we want to try to work again (that’s not an option for everyone.)

Then there is the convoluted process of trying to pull oneself out of poverty and get off of SSI or SSDI. Do you write a letter to the government agency that has been supporting you for years or do you call them? What if they don’t stop payments when you request them to stop? Are you liable for the overpayment? If you are liable, what’s the likelihood that you can pay it back? It’s a never ending cycle that can cause hopelessness and dependence and despair.

I don’t know what the answer is, but I can tell you first hand that the system that is in place isn’t working. Too many of us are suffering unnecessarily in silence and alone. There needs to be stricter penalties for payees that abuse their power and landlords who overcharge for rooming houses. And there needs to be a more universal process for starting and stopping benefits (you can call the SSA three times with the same question and get three different answers.)

Maybe the answer is greater self-advocacy by those living with mental illness. Maybe the answer lies in mass letter writing and petition campaigns for dramatic change to occur. Maybe change will come when our supporters stand up and let their voices be heard. Or, maybe it will take a revolution of individuals quietly and consistently respecting the dignity of every person challenges by mental illness.