My Escape From the Disabling Power of Disability Benefits

The American capitalist system is structured in such a way that most people are unable to provide for the practical needs of their own lives, and must acquire currency to purchase from others the goods and services they’re unable to produce themselves. Everyone finds one societal function to perform in order to earn money to purchase what they need or want from other people doing other specific jobs. These jobs and careers come in many forms: some people teach; others are lawyers or judges; some build houses or fix cars; others manage cash registers or stock shelves; some become therapists or social workers; and then there is a still more cautious profession: being a professional mental patient.

For the low, low cost of continuing to be unable, you too can be a professional mental patient! The government is more than willing to give you free housing (mental hospitals, group homes, subsidized apartments, Section 8), free food (food pantries, soup kitchens, food stamps), day activities (clubhouses, day programs), and most importantly, straight cash (SSI/SSDI). And all you have to do is continue to manifest the “permanent” disability they have so generously diagnosed you with.

I was first put on benefits at the age of 19. Already an accomplished mental patient (I had been experiencing anxiety, various phobias, OCD, depression and drug addiction since I was 12), I met my official social worker during my first-ever involuntary commitment. My newest diagnosable experience was the full-on confusion of a collection of “symptoms” that earned me the title of Paranoid Schizophrenic. Considering that I had worked consistently since I was 16, the safety net of SSDI sounded unimportant — I was more interested in showing her the art projects I was working on. She signed me up for SSDI benefits and added me to some state and local housing lists regardless, and I continued to work on my art projects and interact with beings no one else in the hospital could see, unconcerned with what other people believed about the experiences I was having.

For the next 16 months my benefits proved unimportant because I fluctuated between being hospitalized and staying with my parents when in the community. My benefits eventually manifested their true nature when my parents refused to allow me to be discharged back into their home because of my proclivity for drugs and the insanity that would ensue. As a new resident of a transition-age youth group home, now with rent to pay, my benefits finally took center stage.

Required to leave my group home from 9 to 3, I walked to a local day program every morning and was given enough of a daily stipend to buy a cheap local lunch and a pack of cigarettes. I would attend four scheduled groups I was too anxious to actually talk in, play gin rummy with men 40 years older than me, and then walk back to my group home for dinner before my nightly AA meetings (the early years of sobriety). My entire aspiration was to continue this day program routine until I died. My work day would consist of the morning walk, enough money for cigarettes and lunch, gin rummy with people who would eventually match my age, and as little risk or stress as humanly possible. Eventually I could get promoted to a subsidized apartment and a Section 8 so I could continue my easy life in my own apartment alone. The path was sure, and I was fairly certain the government funding my endeavor would not fire me or penalize me in any way as long as I remained “disabled.”

I followed this path for nine months, fully committed to continue this course unto death. I put much effort into avoiding any suspicion that I was more capable than I appeared because the ease was appealing and every “role model” around me peer-pressured me into assuming that this is just the way people with mental illness live. My great revelation that this path would lack fulfillment came during one of my usual lunchtime gin rummy games. I scanned the room and saw the culmination of my dream — people in their 40s, 50s, 60s and older all sitting around barely talking, sipping coffee at separate tables, waiting for 3 pm so they could walk home to their lonely apartments and go to bed early after cheap unhealthy dinners and generic-brand cigarettes, and then do the same unsatisfactory schedule again the next day, just to stay poor and protect the one real accomplishment of their lives: being disabled and getting free money from the government.

At 22 years old, the horror was palpable and I experienced what I would later learn was called “dissatisfaction as an avenue for change” (more on this later).

Convinced that there had to be some path out of that dead-end parking spot, I resolved to at least not become a professional day program patient. Maybe I could earn a promotion and be a benefit-receiving mental patient but one with more responsibility and a more fulfilling day activity than sitting in on groups I was too anxious to actually talk in.

My journey up and out of benefits began simply as an effort to regain some of my life without any total commitment to forsake my benefits entirely. I got a job working the night shift at a local fast-food restaurant and took three classes at a local community college. The three classes were an effort to spread my net wide with experimentation, and included an accounting course, an intro psych course and a low-level English course (before my psych issues became disabling I was going to school to be a writer, so I figured becoming an English teacher might be the safest bet). I also took one semester’s worth of classes to become an addictions counselor (being one year sober at this point) which I never ended up needing to finish.

I coped with the anxiety I felt being in large public spaces, coupled with my mind’s tendency to assume any and all interactions in my immediate vicinity were somehow a coded transmission directly to me, by practicing various forms of Buddhist meditation. I coped with the fact that my brain was constantly confusing the people around me for other people their bodies resembled by hiding my paranoia and assuming everyone knew.

Eventually my success led me out of the group home and into an apartment subsidized by the group home agency with the promise that I would (within a year or two) qualify for a permanent Section 8 apartment. I felt that if my ascension out of the mental health system and its related safety nets ended here I could die happy, knowing that I at least had a little spending money and something more satisfying to do than sit around playing gin rummy for 40 years. Little did I know the blessing that Mental Health Peer Support would become for my life.

Peer support is a phenomenon that has existed for as long as individuals have experienced challenges they wished to support each other around. As a profession in relation to mental health services, peer support started offering paid roles in Massachusetts around 2006. For no other reason than that I wanted to stop making minimum wage closing a fast-food restaurant at night while I went to school and figured out what I wanted to do beyond being permanently disabled, irony entered my life and I became a professional mental patient that was paid privately more than the government would via benefits if I just stayed “disabled.” I utilized my experience managing my psychotic symptoms on a daily basis in the community and staying sober (around two years sober at that point) to help other transition-age youth find better footing in their communities and hopefully never fall prey to the horror I had witnessed a few years earlier in the cafeteria at my former day program.

My personal mental health symptoms have ebbed and flowed; I have gone through phases of OCD, mania, paranoia, delusion and depression, but the one constant was the will to keep moving forward and not lay down in a system that was more than willing to hold me like a stone forever if I wished. The benefits that I originally would play disabled to protect eventually became trite in comparison to what I found I could accomplish on my own. Whenever I share the story of how I escaped the mental health system, I always highlight that the benefits themselves provide a support to leave them: when I transitioned off of SSDI, I could expedite my reinstatement for five years if I ever needed the financial support again; when I forsook my subsidized apartment for the pride of paying my rent myself, I had three months to give up the job that disqualified me for the subsidy and return to my reduced rent rate.

Everything fell apart with the financial crisis of 2009. By that time I was working 32 hours a week in my third promotion as a certified peer support worker (I was offered 40 hours a week but insisted on only working 32 hours as a wellness tool). I was let go from that agency, lost the apartment I paid for myself, went into minor credit card debt and had to move back in with my parents. My mother insisted I go back on SSDI, but I remembered how hard it was to transition off of SSDI the first time and decided unemployment benefits would suffice for the short period of time it would take me to get a new job.

Over a year later I was anxious to go back to work and the initial relief that short-term unemployment offered was boring into my soul — I needed something to do. My longtime girlfriend (who had just finished an unsuccessful attempt at physical rehab after a car accident) had to move to Cape Cod to live with her mother after I lost our apartment, so when I found a job 90 minutes from where I was staying with my parents but down the street from her I thought serendipity had arrived. I would be the first long-term peer worker in a state group home that had otherwise not known peer support. This new position combined the best aspects of being both a peer support worker in a traditional setting with many of the benefits of being a peer outside the confines of traditional mental health service oversight. At this point my girlfriend was permanently in a wheelchair so I looked into local handicap-accessible apartments, and was shocked to find that every handicap-accessible apartment on Cape Cod was income-based — even having been just recently hired with a base salary at my new job, I was already making too much money to qualify.

My new assignment was to squirrel away enough money to buy and modify a house. Ten years earlier I would have laid down at the proposition and just given up on life, but with the confidence I had acquired over the years (regardless of the fact that I did not have a consistent reality and lived in several different realities on a daily basis), I resolved to rent the cheapest apartments I could find on Craigslist and save money for two years to reach my goal and pay for a down payment on a 3-bedroom cape house with a full basement (my father was kind enough to renovate the house with his friends and my cousin to minimize cost).

I now own my own home, work full time, have a good union-certified peer specialist job with a generous pension plan and I hover at the highest levels of utilization of mental health services; I take one psych med, have a psych doctor to manage that med, have an awesome therapist who is 45 years sober and is a peer himself, and chair a weekly AA meeting with my AA friends. I also recently spent a brief month inpatient because I was blessed with a productive manic episode that those not experienced would assume was a negative (it was not — it was a revelation for my soul).

The only accommodations I provide myself in this full-time peer role are: I have anxiety when I feel trapped so I need to pre-plan my routes to meet my clients where they live (now meeting clients in the community) according to expected traffic patterns; feeling trapped being a general source of anxiety, I need the assurance of my supervisors that I can leave any meeting at any time to keep my anxiety manageable (and when my anxiety rises I can meditate, or leave the room, or distract myself on my cell phone); and when I am in a crowded meeting with several people talking over each other my brain becomes overwhelmed and starts interpreting the conversation as coded messages secretly about my character or circumstances outside of work, which I also manage with meditation and self-assurance that I am experiencing a symptom that will pass with time.

I am now almost completely released from the traditional mental health system, but as a paid peer worker I come back in five days a week to remind those still within the system that there is a way out and a million directions to go in. I often see mental health consumers protecting their benefits to the detriment of their dreams, justified by a thousand reasons, but I am writing this story to assure you: TAKE THE RISK! There are people who have escaped the mental health system and accomplished far greater feats than me. No one who initially relies on the security and support of the traditional mental health system should ever settle for the services and supports they needed to stay stable at their worst moments. Dream of your best personal life and rise up so high out of the supports that kept you from crashing at your worst that you are an inspiration for yourself and those who would witness your accomplishments!

You do not need to defend your benefits because you believe they are the best version of you. With planning, patience and a constant reassessment of your progress, you can escape the confines of the safety net that will be your spider web if you never decide to leave it. As Lao Tzu wrote in the Tao Te Ching, “the journey of a thousand miles begins with one step,” and I always like to add: “you’re always going somewhere in time anyway — you might as well go somewhere worth your valuable time.”

I’m not saying that you have to completely vacate the traditional mental health system in one step, but I am advocating that there are many places to go beyond your immediate comfort, and that growth should be an eternal process. Every supposed barrier can become an opportunity at conquest. Fear is the ultimate enemy but another enemy is complacency and not looking repentantly enough at your life to even value the concept of change.

With wisdom, you can find your next personal step — a state of rest does not have to be your final destination. There is always work to be done across the span of a long life, and the best way to find your next great chapter is this: if you are uncomfortable or dissatisfied with some aspect of your life, that dissatisfaction can be understood as an avenue for change. It can point toward your own unique capacity for change, rather than being merely a negative reality you are forced to accept, protect, or look away from out of fear of failure if you were to truly try.

“There is a crack in everything, that’s how the light gets in,” wrote Leonard Cohen. The three areas of change in any individual’s life are character, company and circumstances. Time should not be squandered as a useless grant, and complacency is not a virtue. There is a time for rest and comfort, and value in both, but hope never settles for a life that is merely tolerable.