March for Dignity and Change for Mental Health, Washington, DC
On October 10, 2016, in a unified voice with supporters, providers, family and friends, people living with mental health conditions called for: an end to unconscionable levels of unemployment, incarceration, homelessness and disability; an end to underfunding of services, harsh practices and fail-first systems in which involuntary status is requirement for care; an end to negative portrayals and scapegoating; an end to a society in which people with mental health conditions die up to twenty-five years before the rest of the population; and a beginning to a new era in which every one faced with mental health challenges is supported to get the right kind of help when needed, and valued in their communities nationwide.
12th Annual NYC Mental Health Film Festival
Organized by Carla Rabinowitz, Advocacy Coordinator, Community Access
On October 1, 2016 at the historic Village East Cinema, the 12th Annual New York City Mental Health Film Festival (#MHFF) presented 12 inspiring films about life, mental health, recovery and hope.
We were honored to present the East Coast premiere of “Boxed In,” the directorial debut of actress Tasha Smith, and the Manhattan debut of “Mind/Game,” which chronicles WNBA star Chamique Holdsclaw’s battle with bipolar disorder.
Filmmakers and cast members joined the festivities and participated in lively Q&A sessions with the audience.
On Getting the Most Out of Life: An Interview with Jane Grandi
By Carl Blumenthal
Jane Grandi, 65, has coped with mental illness since adolescence. She has found satisfaction in family life, employment, and advocacy. On the day I interviewed her, she wore a Museum of Modern Art T-shirt with pictures of famous artists on it. Monet is her favorite because his paintings of water lilies represent tranquility.
City Voices: Can you describe some of your jobs?
Jane: I worked in retail, in sales, at Abraham & Strauss, Sachs Fifth Avenue, and Franklin Simon. Did some modeling of clothes for customers. My first husband was a police officer. I was a traffic enforcement agent (“meter maid”) for 17 years.
Voices: And education?
Jane: I graduated Midwood High School. Got 18 credits from St. Francis College. [Both in Brooklyn].
Voices: What are examples of your advocacy?
Jane: One time I convinced a jury I was on that a young guy accused of robbery shouldn’t be convicted because he was in the wrong place at the wrong time. Twenty-five years later I saw him again. He had become a police officer. It was the best day of my life.
My involvement with law enforcement. I know how to talk to officers at meetings on how to treat people with mental illness. I’m against solitary confinement. It makes you mentally worse. There’s no justice for many people.
I went to [Senator] Schumer for help [when he was a congressman]. He told me I had Medicaid rights and helped me get food stamps. It’s good talking to politicians about what’s on your mind.
Voices: What are your other activities?
Jane: I take care of my husband who’s older than me. The usual things a wife does.
Voices: Anything else?
Jane: I’m beginning to write about my experiences. A doctor once told me writing about myself wasn’t good. But now I feel better when I do. Writing relieves anxiety.
I go to support meetings here. I’ve been to ones at Baltic Street [Advocacy, Employment and Housing, Inc.].
Voices: What are your plans for the future?
Jane: I’ve taken some of the peer courses [at Academy of Peer Services]. I’ve applied to Howie the Harp [for peer specialist training] a couple of times. Withdrew my application cause I’m not sure anyone would hire me at my age.
Voices: It sounds like you would have a lot to offer with all of your experience. Why not give it another try?
Jane: They told me if I want to I’ve got to fill out the application again. I’ll need to go to 125th Street [Howie the Harp’s Harlem office] and do it there.
Voices: Anything else you’d like to do?
Jane: I don’t think ahead the way I used to. One day at a time. I like dancing. I learned as a kid. We do ballroom dancing at the senior program where I go.
Voices: Thank you for sharing your life with us!
Determined to Help Others Along the Path Through Life
By Steven Alvarez, Intern, Urban Justice Center's Mental Health Project
Finding Purpose During the Good and the Bad Times
I truly believe that everything happens for a reason. If it weren’t for my own struggles, and meeting many peers with the same issues, I would never have gotten into this work. One friend that I met, Faigy Mayer, would ultimately set me forth on a new path in life, to work in mental health. I met Faigy during this transitional phase of my life. When she died, it only fueled me deeper along my path.
Growing up, I remember being terribly shy and not having many friends. I grew up in a hostile environment in which my dad (although I love him to this day) was physically and verbally abusive to my mother. I ended up inheriting his anger.
One day I stopped doing my homework. I couldn’t find the motivation, and worried that the kids at school would make fun of me. So rather than face the embarrassment I stayed at home. Eventually my mother took me to see the guidance counselor at school. The guidance counselor asked me if I wanted to go to class. Since I feared my classmates, I got angry and knocked everything off of her desk. She called the police, and when they came, I wouldn’t talk to them. They took me to a hospital, in which I was later admitted. I would live with the label of “crazy” from that point forward. I was only ten years old.
I began to act out and live by my own rules. I wasn’t the class clown; I was the class terror. Cursing out the professors, getting into fights, cutting class, smoking weed, and the like. I even remember getting picked on by the special-ed students and fighting back in the craziest ways possible to make them leave me alone. I was getting bullied, and unfortunately, to fit in, I was also a bully.
During this point, I was put on one of the most powerful drugs on the market called Clozaril, an atypical antipsychotic, usually used as a last ditch effort to treat the most severe cases of psychosis. Its list of side-effects are horrendous, but the worst required me to take a blood test to check my white blood cell count. Besides killing off my white blood cells, my weight ballooned to 300 pounds.
When I was taken off Clozaril my life changed. I suddenly became a new person, mentally and physically. My therapist describes me as waking up, as if a whole new person arrived, as if I had been living in a bubble all these years. My life started to transform. I became more socially active, lost 100 pounds, gained friends, and a girlfriend. Amazing things started to happen.
I relapsed in 2011 and was hospitalized three times that year. I emerged with a new vision, but unfortunately I was heavily medicated, and regained all of the weight I had lost. Still set on my mission, I eventually got off of another antipsychotic, Zyprexa, and lost the hundred pounds once again.
During this time, I ran support groups, threw the craziest parties, hiked, bowled, played pool, anything and everything, with a group of friends I will love for life. I credit two “Meetup” groups for my recovery: NYCDSG (New York City Depression Support Group) and, first and foremost, the New York Shyness and Social Anxiety Meetup Group. Through these social interactions I have lived several lifetimes in a matter of years.
In January of 2016, I enrolled in the Howie the Harp Peer Advocacy Program. The training was like no other. Every day was a struggle, but also a gift. I began to realize that all of the things I went through had a meaning and purpose. I needed to suffer so that I could help decrease the suffering of others. The training was awesome and the people I met even more so.
One day a friend messaged me about an Open Mic Night hosted by the Urban Justice Center, the law office I’m currently writing from. If I learned anything, it is that experiences, both good and bad, will prepare you for the future. Sometimes in life, our future works out based upon our plans and sometimes it doesn't. I often reminisce about my friend Faigy, and the times I went to visit her in the hospital. I know she would want me to continue to help others as I helped her and to never let go.
Ward StoriesOrganized by Dan Frey, Editor in ChiefSix poets are featured in this Winter 2017 edition of Ward Stories: Carolyn Sanzenbacher, Debra Faes-Dudden, Carl Blumenthal, Susin Postovoit, and Matty Guerrero. Some poems are seasonally-themed, some upbeat, some clever, some positive, some raw, but all have something to offer as you sip your hot spiced wine by the roaring fire with our publication in hand (or on screen). Be well and have a safe and satisfying autumn and winter.
Autumn Pilgrimage
By Carolyn Sanzenbacher
It was not from disrespect that we smelled of musty earth when the pawpaw trees felled fruits that oozed into engraver's cuts, rendering the headstones nameless and mute.Here is grandmother, we would say to one another,and there is aunt Vivian who died blind before sixteen, and there is Connard who didn't die from the fever like Vivian did. Others too, stared up from the stones weuncovered each autumn.The unrotted fruits were sweet like mangobut bitter near the peel. Seeking the edge between the two would twist our mouths in joy and throw us back on feather-veined leaves burying the stones we came to revive.Of those amber colored seasons when the acrid was so freely tasted and the dead so simply resurrected, little remains now but for the stones we used as pillows.Long silenced by passages of untasted fallings,iced by slow coming winters, then dried to burnt sienna before the next autumns came.
Living with Mental Illness
By Debra Faes-Dudden
How pretty a picture I would like to paint
Oh, to taste the meringue atop a lemon pie
Or the chocolate chip cookie just so warm from the oven
Mental illness is none of these
Not pretty, not melt-in-your-mouth, sweet and warm
It’s an isolated desert where many of us are lost
Our pockets are empty, our shoes weighted with sand
Our eyes tear out of grief and frustration
Panic makes our legs weak and some of us fall
Confusion is a constant itch when the pace of life gyrates too fast or too slow
And when we awake in the morning,
sometimes we don’t know where we are
Criticism is a cruel response from people
They see our struggle then turn a blind eye
Our voice ripples against seemingly deaf ears
They fear what they do not understand
This awareness does not decrease painful rejections we feel
Mental illness is chronic physical illnessDepression, anxiety, schizophrenia stand besidediabetes, fibromyalgia, asthma, and heart disease
All require patience, understanding, and ongoing treatment
We are all God’s childrenPlease treat us with respect
Here’s What Mood Swings Feel Like…
By Carl Blumenthal
Little Red Riding Hood devouring the Wolf.
Hansel and Gretel stuffing the Witch with bread crumbs.
The Three Bears ordering Goldilocks to bed without porridge.
Tom Thumb bulking up for the Olympics.
The Hare’s Adderall pooping out before the finish line.
Rumpelstiltskin forgetting his name due to Alzheimer’s.
The Giant grinding Jack’s bones for bread flour.
Snow White awakening by her Stepmother’s kiss.
The Wolf’s asthma saving The Three Little Pigs’ homes.
Pinocchio sticking his nose in one too many lives.
The Fisherman catching the Fish with his wife as bait.
Beauty turning into a Beast after the marriage.
The Boy Who Cried Wolf becoming a zookeeper.
Cinderella growing too fat for the glass slipper.
The naked Emperor being mistaken for a porn star.
Rapunzel losing her hair during chemotherapy.
The Goose Who Laid the Golden Egg getting constipated.
Humpty Dumpty rebounding from the fall of the king.
Flights of Fancy
By Susin Postovoit
Oh yes!
Life's a mess,
I must now confess,
Instant highs caress --
They’re escapes, a mess.
Lies bound with tresses,
In plaits, then pressed.
Naughty! I should stress.
Knotty! to digress.
Lies naughty, useless.
Lies press and harass,
Lies that I suppress --
Ah! Not a success.
I'm flying, oh yes?
Still, nevertheless,
I dress for success --
A liar’s useless.
I'm a liar, I'd guess…
States the choir: Oh yes!
I'm Ready
By Matty Guerrero
I walked in,
Everyone expects me to be nervous,
But it looks like I've been doing this my whole life...
I have the talk,
And I have the walk.
Of course,
I'm scared to death in my head,
Not knowing what's going to happen.
But, oddly, that's not the right word for it...
I'm not scared.
I'm ready...
To face everything you throw my way.
I'm going to fight,
Until it comes out right.
So thank you,
For challenging me.
Federal Judge Approves Settlement Agreement Requiring ACCESS-A-RIDE to Provide Due Process
By Nahid Sorooshyari, Senior Staff Attorney, MFY Legal Services, Inc.
Now Customers Can Have a Fair Appeals Process
On September 13, 2016, a federal judge in the Southern District of New York approved a class action settlement that will change unfair Access-A-Ride (AAR) policies for tens of thousands of New Yorkers with disabilities. Under the settlement, NYC Transit (NYCT) must give people it has found fully or partially ineligible for AAR a fair chance to challenge the decision.
AAR is New York City’s transportation service for people whose disabilities make it very difficult to use the bus or subway. People with all types of disabilities, including psychiatric and episodic disabilities, are eligible for AAR. To apply for AAR, you must complete a written application and an in-person evaluation. You may be found: continually eligible for a lifetime; fully eligible for one year or five years; conditionally eligible, which means eligible to use AAR when a specific condition, like cold weather, is present; temporarily eligible for a period between one month and one year; or ineligible. People who are found fully or partially eligible must recertify their eligibility at least every five years.
The lawsuit, filed by MFY Legal Services in May 2015, claimed that NYCT’s eligibility procedures violate the due process clause of the US and NY constitutions, the Americans with Disabilities Act, and state regulations. Five New Yorkers with disabilities were the named plaintiffs. All five had applied for and, at various times, been denied AAR. The five named plaintiffs represented a class of New Yorkers with disabilities who applied, or tried to recertify, for AAR service since May 2012, or will do so in the future. One named plaintiff, Ms. Walsh, had AAR for over five years. When she tried to recertify in 2014, NYCT changed its position and found her eligible for only three months, even though her disabilities had not improved. When she reapplied in hopes of getting more services, NYCT changed its position again and found her completely ineligible.
Due process requires that the government give someone who applies for or receives government benefits meaningful notice and an opportunity to be heard before denying or reducing benefits. Ms. Walsh faced the same due process problems as thousands of others applying for AAR. NYCT sent her the same notice they send everyone who is denied AAR, regardless of their disability—a boilerplate letter saying she was denied because she could complete a list of eight tasks related to taking public transit. The letter did not tell her that she had the right to request her assessment records or how she could do so. The letter said that the decision was effective immediately and she could not take AAR to appeal in person. Ms. Walsh won her appeal with the help of attorneys, but thousands lose appeals and are not told of their right to request records from the appeal or to challenge the appeal decision in court. MFY filed the lawsuit to fix these problems.
After months of negotiations, the parties crafted an agreement that fixed the due process problems. NYCT can no longer just send every person who is denied AAR the same letter; now, it must mail a copy of each person’s “Denial Form” with the letter. The Denial Form is an individualized summary of the assessor’s main reasons for denying the applicant. The letter will also explain a new procedure to obtain assessment records within 30 days, free of charge. This will give people more information to prepare for appeals. For current AAR users who are found ineligible or whose level of AAR is decreased after recertifying or otherwise reapplying, NYCT will provide aid continuing for the 60-day period to appeal or until the appeal is decided. NYCT will now include a statement of its eligibility criteria for AAR on its website and all new AAR applications. NYCT will also adopt a non-discrimination policy that includes a statement that it will not discriminate against people with episodic disabilities.
The named plaintiffs are thrilled that NYCT must now provide notice and an opportunity to be heard to those it finds fully or partially ineligible. Ms. Caldwell, a named plaintiff whose previous application and appeal for her nine-year-old daughter were denied, said: “I’m happy to know that if my daughter is denied Access-A-Ride again, the process for appealing will be clearer and fair.”
Plaintiffs were represented by MFY Legal Services, Inc. and Pillsbury Winthrop Shaw Pittman LLP. If you have questions about the settlement or need help with AAR, please call MFY toll-free at (877) 417-2427.
The
“Like-Minded Rally” Outside of the 2016 Democratic National
ConventionBy
Carla Rabinowitz, Advocacy Coordinator, Community Access, Inc.
Rally
for Mental Health and Substance Use Communities in Philadelphia, PA
On
Tuesday, July 26, 2016, we had a blast in Philadelphia, in Dilworth
Park, the political hub outside of the Democratic National
Convention. There were rallies for Bernie Sanders and a march for
Black Lives Matter while we were there, and people were selling
political buttons and passing out literature for “Food Not Bombs”
and other advocacy events in the area. Elected officials were milling
about. We even bumped into some famous reporters like Geraldo Rivera
who were documenting the convention. Community Access and NYAPRS
sponsored two buses for this once-in-a-lifetime experience.
We
heard from speakers on mental health like former Congressman Patrick
Kennedy, who championed behavioral health parity when he served in
the House of Representatives. Also speaking was the CEO of the
National Council for Behavioral Health, Linda Rosenberg, who grew up
in New York City and used to work as the Commissioner of the New York
State Office of Mental Health.We
heard from a super delegate from New Jersey, who rushed back to the
convention after speaking with us; he needed to get to the convention
in enough time to vote.
We
heard from family members and substance use advocates who spoke on
the need for increased access to services and increased funding for
community supports.
The
event, called the “Like-Minded Rally,” was part of a national
movement to call attention to the need for federal funding for
substance use and mental health services and was sponsored by the
Kennedy Forum, the City of Philadelphia Department of Behavioral
Health and Disability Services, and the Scattergood Foundation.
It
was hot, but we were in a part of the park with water fountains that
stretched from the beginning of the park to the end. The event
organizers had plenty of ice and water for people attending the rally
who came from various parts of Pennsylvania and New York. Community
Access brought water and plenty of granola bars and sandwiches so we
could keep our energy up throughout the day.It
was a once-in-a-lifetime experience to be so near the Democratic
Convention. Patrick Kennedy took personal pictures with everyone. He
was so gracious and demonstrated his commitment to service-users and
family members. Some folks took pictures with the politicians and
media in the park.
Most
of us were just watching everyone from the convention come and go in
the park, listening to the music, and having a great time.On
the way home we were singing and chanting, remembering our power and
voice as advocates. It was a day to remember.Pullout:
“On the way home we were singing and chanting, remembering our
power and voice as advocates. It was a day to remember.”
