Schizophrenia and The Recovery Movement

  • The recovery movement for schizophrenia and other mental illnesses is in full-swing.  Championed by peers who are direct recipients of health services, the movement gives voice to our needs and challenges, hopes and dreams living with diagnoses.  It is often quoted to be the last great civil rights movement.


    Over the years, as peers continually bonded together at conferences and other forums, and through work as peer advocates, the movement has grown strong.  We have worked on a city-wide scale in New York City to lobby for equal rights to half fare cards for public transportation for people who collect SSD, to a decade-long protest against unequal treatment in health care: with the passage of the parity bill on the federal level.

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    It was not always this forceful or effective.


    I was diagnosed in 1987 and there were little options available for peers back then.  My introduction to the system occurred when I began attending a couple of day programs after I came out of the hospital.  At the second place, you were assigned a slot in the various levels of groups.  My counselor placed me at the bottom and I fought like heck to rise up so that I could be sent to OVR, now VESID, to be trained as a word processor so I could find full-time work.


    I did not want to warm a chair in the day program for the rest of my life yet I knew only one other woman determined like me to go to school and find work.  Not surprisingly we were good friends and remain so to this day.


    I almost didn't get the chance to go to OVR because my counselor looked at my trendy clothes and said, "How do you expect an employer to give you a job?  You dress very Greenwich Village."


    She needn't have worried.  For my first job, I created a professional wardrobe that was the envy of my boss who made triple my salary.


    The beauty of the recovery movement today is that you are not alone in what you go through and you do not have to go it alone for the rest of your life.


    The most basic form of support is a NAMI Connection peer support group.  To find one in your city or town in the U.S., dial (800) 950-NAMI (6264).  Peers meet weekly for feedback and encouragement and support and often go out afterward to lunch or dinner or a coffeehouse.  I met some of my best friends this way and continue to be friends with them even though I no longer attend the group.


    A Clubhouse like FountainHouse in New York City is a place where peers go for activities and employment.  Find one where you live by logging on to the International Center for Clubhouse Development's web site.  They are a worldwide resource exclusively for peers to mix and mingle. 


    I used to attend FountainHouse in the 1990s and met a woman there that I stayed friends with for four years.  It had a cafeteria where you could get a hamburger for a dollar.  I was a member of the Thursday night poetry group.


    The U.S. Psychiatric Rehabilitation Association web site offers a good introduction to exactly what recovery is and means for peers:


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    Individuals recovering from mental illnesses are able to successfully live and work in the community, enjoy active social lives, attend school, practice their faith, maintain a healthy lifestyle-all while managing their own illness with the supports they may need.


    The U2 song title sums it up best: "Sometimes You Can't Make It On Your Own."  With appropriate support in place that is person-centered and recovery-oriented: individuals diagnosed with schizophrenia and other mental illnesses will not only thrive: we will excel.


    Gone are the days when the only other option was to assemble pens in a sheltered workshop.  Indeed: sheltered workshops are no longer considered suitable employment.  Some peers own their own affirmative businesses and work alongside each other to provide goods and services. One such workplace is Special Tees, on Staten Island, a borough of New York City, where peers design and create and manufacture tee shirts for their paying clients.


    Really today the sky's the limit for what a significant amount of people diagnosed with schizophrenia can achieve, and indeed people diagnosed with schizophrenia can recover.  Long-term studies suggest 60 percent of those with a diagnosis of SZ recover fully or significantly improve-and among those who do less well good improvement is also possible.


    Elyn Saks, who holds a JD from Yale and wrote a best-selling SZ memoir, The Center Cannot Hold, is one such person I interviewed at the Connection when her book came out.  I hope to take my place alongside her with my own memoir, Left of the Dial.


    The battle cry of the recovery movement is "Nothing About Us Without Us."  This ethic of self-determination guarantees we have the right to choose how we want to live our lives.  Nobody else gets to make these decisions for us.  We are empowered because we have firsthand experience meeting the demands of our schizophrenia.


    One thing is certain: it is not only vital, it is necessary that individuals diagnosed with MIs not only have a recovery movement: we must take active roles in it so that the movement continues to serve us well.


    Giving voice to each other is something I aim to do in my own humble way as the community leader and expert blogger here at the Connection.  It is a second job for me and I have a third job on the side.  I do this because I believe in my vision that people can recover from schizophrenia.


    This is my life's work: to be a messenger of hope.


    At this time I welcome your insights and suggestions and comments on this topic.  What has been your experience with or in the recovery movement?

Published On: January 06, 2011