[WORDS] Bookstore
179 Maplewood Ave, Maplewood, NJ 07040
(a second smaller location is now open in LifeTown village, the Friendship Circle program in Livingston, NJ)
(973) 763-9500

http://wordsbookstore.com/

Name of contact/founder: Jonah Zimiles

“Bookstore in New Jersey suburb of Maplewood where people with autism receive training and work. Owner is proud that many use this training and move on to other jobs. Store is a “safe space” for people with autism and their families. The well-stocked bookstore has a disabilities/special needs section with books and resources. Store features regular author talks as well.”

My Visit/The Story of [Words]:

I originally learned of [Words] and its founder/owner, Jonah Zimiles, at the HIlibrand Autism Conference in NYC a few years ago. Jonah was kind enough to invite me to visit , take a tour, and learn about the book store.
Jonah had been a lawyer and law clerk and eventually worked in the Jewish community as head of planned giving for Council of Jewish Federations. He then began cutting back his work hours to spend more time with his son with autism. He was considering various “more manageable” job opportunities and decided to get an MBA in social enterprise. He considered starting a consulting firm or a fund. One idea was to consult to small businesses in exchange for getting them to hire people with disabilities. His wife, Ellen wanted to open a vocational institute when their son with autism was 12. She then saw a sign for a bookstore which was closing. They decided to purchase the book store, run the business and do the training.
The tour of the book store with Jonah included such well stocked sections as adult and children’s books, fiction, non-fiction, travel, test preparation, disabilities and more. The store also sells such items as book lights, mugs, socks, greeting cards and more. The store features advertisements for upcoming author talk and other events which take place on a regular basis in the same downstairs space where many of the employees with disabilities work.
Jonah’s original plan when they started the store in 2008 was for a 6-month apprenticeship which “gave a heksher” to the training participants receive. They would then get hired to work in another industry or store (in a Barnes and Noble, for example). Jonah has observed that many job sites focus on the highest functioning people with autism, whereas he focuses on “middle to bottom” and people who are nonverbal. He notes that most skills learned in the bookstore are applicable outside of a bookstore environment.
To date, more than 100 people with disabilities have received training and worked in the bookstore, doing such jobs as recycling, breaking down boxes, making deliveries, driving to the town dump (some participants have driving licenses), cleaning, and shelving books. Some workers do direct work with customers, though most do the types of behind the scenes jobs mentioned above. Jonah commented on just how difficult it is for even a person who is neuroypical to be a sales person as they need to know books and be hyper-social with a sales personality. As we discussed training in both hard (job) skills and soft (interpersonal, job site) skills, Jonah was emphatic in noting, “If they can do the task, we don’t care what the behaviors are.” Jonah would prefer they get jobs done which are valued by society (i.e laundry), “even if they are making noises while working!” Jonah pays his employees (though he is not permitted to pay the trainees who come through the school district). He feels the concern often raised that people with disabilities jeopardize their Social Security benefits by working is “overblown” since most can’t and don’t work that many hours.

From the website:

Our mission & vision: [words]‘ mission is to serve Maplewood and surrounding communities by offering an engaging and welcoming atmosphere for people and families of all stripes to pursue their literary interests. In particular, we are dedicated to the families in our community that have a member with a developmental disability. We strive to help Maplewood become a model community of inclusion through our treatment of disabled customers and employees, especially those with autism.

Lessons Learned/Observations:

-We didn’t know how to do retail when we started off. We were not vocational training experts when we started—these were two big challenges

-The special needs part is the easiest part of the job; running a business is extremely difficult (“I sell over a million dollars of books in the store and still struggle to break even”)

-Autism Speaks and Extraordinary Ventures identified 10-15 businesses like Words, Rising Tide Car Wash, etc. approximately five years ago and had a conference—informs me there WAS a similar initiative to what I am doing (he also suggests that this has not continued and feels there is a need for bringing various stakeholders together.

-Most of the jobs available to people with autism deal with a small segment the autism population (he calls them “The Ivy Leagues.” He reports, “We are interested in the much tougher “middle to bottom” part of the spectrum. I am interested in people with limited language. A disproportionate number of programs focus on the higher functioning group.”

-Google and other companies hiring people with disabilities is wonderful BUT it gives a very distorted view of autism and disabilities (most do not function at this level)
-More people need to address the problem.

-Families of children with disabilities, even those “of means” often can’t make big donations of money to organizations since they will have life-long financial needs related to their children (as they age).

-The number of details I need to know about stuff can be overwhelming. I need to review 20,000 books per year and this is just front list adult buying (others do kids and replenishment). These take time and effort. It is a LOT of work”

-There are always new and unexpected costs. For example, there is a new charge for green in the town; it is constant (the charge), but it is the reality. Also, there is competition (others in the same business)
-Websites are ridiculously hard (and costly)—they require constant upkeep

-If they can do the task, we don’t care what the behaviors are” (teach them to get jobs done which are valued by society. For example, I’d prefer they “get the laundry done!”—even if they are making noises while working!

-Wife Ellen reports in a CBS 880 radio interview: “People with autism are adults longer than they are children”—this is why we need job sites and jobs!

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Original Article in Jerusalem Post

The Jewish and engaging Kaufman is perhaps its most colorful member. Her family and personal stories weave deep connections to Jewish causes while offering a window into American history.

NEW YORK – The packed crowd at the Mercury Lounge on Manhattan’s Lower East Side last week was witnessing a rare feat – the New York debut of a band that formed in 1967.

Ace of Cups, the all-female San Francisco rock band from the heady Summer of Love, who shared stages with the Grateful Dead, The Band, Quicksilver Messenger Service, Jefferson Airplane and opened for Jimi Hendrix at a free concert in San Francisco’s Golden Gate Park, might have been one of the only hippie bands of the era who didn’t nab a recording contract and become stars.

However, a half-century later, with it members now grandmas and hovering around the 70-year-old mark, the band with four of the original five Aces – Denise Kaufman (vocals, bass, harmonica), Mary Gannon (vocals, ukulele, bass), Mary Ellen Simpson (vocals, lead guitar), and Diane Vitalich (vocals, drums) – were rocking the crowd and enjoying the accolades.

Their debut album released late last year, and featuring contemporaries like Jorma Kaukonen and Jack Casady (Jefferson Airplane, Hot Tuna), David Freiberg (Quicksilver Messenger Service), Barry Melton (Country Joe & The Fish), Pete Sears (Jefferson Starship, Moonalice), David Grisman, Steve Kimock (Zero, RatDog), Bob Weir (Grateful Dead), Taj Mahal and Buffy Sainte-Marie, has won them the full-fledged recognition that evaded them the first time around, as well as a sense of vindication and jubilation.

The Jewish and engaging Kaufman is perhaps its most colorful member. Her family and personal stories weave deep connections to Jewish causes while offering a window into American history – from the Stock Market Crash of 1929, to the early and late 60’s Bay Area scene.  

Raised in northern California, Kaufman played piano, guitar and wrote songs from an early age. At her high-school graduation in Palo Alto, Jerry Garcia, the famed lead singer and guitarist of the Grateful Dead, played at the after party. She traveled on Ken Kesey’s bus as part of the Merry Pranksters (when LSD was available in vats of Kool-Aid), and was chronicled as Mary Microgram in Tom Wolfe’s The Electric Kool-Aid Acid Test.

Kaufman attended Lowell All-City School in San Francisco for the first two years of high school, joining her first picket line in San Francisco at age 14. She then transferred to the Castilleja School in Palo Alto, “the same school Grace Slick had previously attended.”

The legends of the up-and-coming 60’s music scene were very accessible. When Kaufman graduated high school in 1964, she arranged to rent Bimbo’s 365 Club in North Beach, San Francisco. “I had to find a band, and hired my favorite local band, The Zodiacs, which included Pigpen [Ron McKernan] and Jerry [Garcia]!”

After taking summer school classes at Stanford, Kaufman started her studies at UC Berkley, intending to study political science and theater. 

“It was always my vision. Kennedy had been shot. I was in Youth for Kennedy. I studied Latin American studies and Shakespeare.”

Berkeley was emerging as a center of activism and protests. 

“Outside of Sprout Hall, every political perspective was represented by the card tables full of brochures and people on soapboxes. There was a sense of ‘We can do this! We can change the world. We have to!’ I was in heaven there!”  

Kaufman vividly recalls that, within a few weeks of arriving at Berkeley, the campus police removed all the tables and told the organizations that they could no longer operate in any way on the campus. 

“This started the Free Speech Movement,” she continued. “From the first day, I was one of the students ready to fight this battle. Within two months, 700 of us got arrested and our free speech rights were eventually upheld.”

As the counterculture unfolded with its twin flags of music and drugs, Kaufman indulged in both. She describes her involvement with LSD as having “a deeply life-altering effect – there were no words to talk about it.” Even though it wasn’t yet illegal, she recalled that she met resistance at home. “My parents were terrified,” she said, adding that she was one of the youngest involved in Kesey’s escapades, along with the Dead’s Weir and Mountain Girl, Kesey’s girlfriend who would go on to become Jerry Garcia’s wife.

Kaufman always felt she was embodying the Jewish values and that they were always a part of the Haight-Ashbury, San Francisco 1960’s scene. “It was all so intertwined.”  

She notes the involvement of so many of her peers in various civil rights, social justice and spirituality causes and movements.

After meeting the other women in Haight-Ashbury in early 1967, Kaufman and Ace of Cups became integral components of the live music scene in the Bay Area. She was romantically linked to both Paul Simon and to Rolling Stone-founder Jann Wenner.

However, at the same time as compatriots like Grace Slick and Janis Joplin were catching national attention fronting male-dominated bands and receiving record contracts, Ace of Cups were facing challenges. 

“The record label guys that were coming up from LA didn’t know what to do with us. I don’t think we fit in with what they wanted,” said Kaufman. 

They stuck it out without a recording contract for another few years, but by 1972, the band was finished and music made way for motherhood, family responsibilities, “day jobs,” and for Kaufman, life in such exotic places as Kauai, Hawaii.

But nearly 35 years after performing with Jimi Hendrix, the band had an important break – in 2003, it released “It’s Bad for You But Buy It!,” a well-received CD of 1960s “rehearsals, demos, TV soundstage recordings, and in-concert tapes.” 

In 2008, a DVD of their performances from the 1968 television program West Pole was released. 

An even bigger break came on May 14, 2011 when the band reformed and performed at Wavy Gravy’s 75th birthday party and a SEVA Foundation benefit. George Baer Wallace, founder of High Moon Records – in attendance at the Mercury Lounge show – was moved by their performance and offered them a recording contract.

Once again in the limelight, their schedule has been demanding and fun-filled. Before their Mercury Lounge show, the band members appeared onstage with Sirius FM radio host Gary Lambert, who playfully suggested they receive a Grammy Award for best new artist.

The evening kicked off with a video showing the band’s storied history, and continued with an animated Q and A discussion with music editors and writers from Rolling Stone, Relix and other publications. The band played a full electric set and Patti Smith Band guitarist and rock historian Lenny Kaye joined the band for “The Well.”

The next day, they went to Philadelphia for NPR’s World Cafe, and were out late Wednesday attending a Wailers concert at Brooklyn Bowl. Later in the week, they participated in a Friday Night Jam with Rabbi Daniel Brenner and Relix’s Mike Greenhaus at New York’s Rockwood Music Hall.  

The band proudly reports that they have so much additional material that they’ll release their follow up album next year, featuring contributions from Jackson Browne, Wavy Gravy and others. 

The Grateful Dead may have written the line, but it most accurately applies to Ace of Cups – “What a long, strange trip it’s been.”

A JEWISH JOURNEY

Denise Kaufman’s parents were “deeply involved” in Jewish causes. “People always came to our home for dinner – from Brandeis, Hadassah, Federation – causes related to Israel.”

She has photos of her parents with both Golda Meir and Moshe Dayan from fund-raising trips they took to America, and she traveled to Israel – once with her parents, and once with a boyfriend in 1980. Her parents even owned an apartment in Netanya.

“They always gave it to their friends to stay in order to have a more local experience of Israel,” she says.

Kaufman mostly raised her now-adult daughter, Tora, on the Hawaiian island of Kauai, where she cofounded a school (The Island School), arranged Seders (“We had 120 for a seder in 1983!”), served on the board of the Jewish Federation of Hawaii, and hosted Entebbe mission physician Ilan Kutz.

Kaufman speaks fondly of the Friedmans, Israeli friends she met on Kauai in 1980. “Their daughter and her family now have an organic a farm next to ours.”

In 1980, Kaufman and her boyfriend spent a few months in Israel, which she recalls affectionately. They played Hawaiian music (on the dulcimer and guitar), and appeared on the Israeli TV program, Kitoret, with Yaron London. They played at Jerusalem’s Tzavta Theater, surfed in Yamit (“We bought a little car”), surfed and camped in Dahab, in the Sinai.

“One of the most amazing musical experiences of my life happened under the stars in Dahab. We started playing music in the desert night – there were no lights and we couldn’t see anyone, but people in the dunes around us began to join us in song. We sang with an unknown choir almost till dawn.”

Kaufman continues to be actively involved in Jewish life. She speaks fondly of Rabbi Mordecai Finley, her rabbi at Ohr HaTorah in Los Angeles, where she currently spends most of her time. She plays bass there every Shabbat and holiday when she is in town. Kaufman notes that this was also Leonard Cohen’s shul.

In Los Angeles, when she’s not rocking with the Ace of Cups, Kaufman is a private yoga teacher and has worked with Madonna, Quincy Jones, Jane Fonda, and former basketball great Kareem Abdul-Jabbar.


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Spectrum Design is a Los Angeles, CA-based job training center that offers skills training for people with disabilities, placing participants in local autobody shops for short- and long-term employment

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717 Maple Street
Stowe, VT 05672W
www.purelypatrick.com
purelypatrick@gmail.com
Phone:  802-477-3928

Founder: Mary Anne Lewis (Mary Anne and husband George, operate the Brass Lantern Inn Company is named for son Patrick Lewis.
Job Coaches: Carrie Cota; Miranda Maxham.Phone:  802-477-3928

“Purely Patrick is a one-person business run by Patrick Lewis, 27, (with the help of his mother and two job coaches) from his room in his parent’s Brass Lantern Inn. Patrick is a young man disabilities and many abilities who assembles and sells various products including kits for soups, cookies and dog biscuits through the use of assistive technology.  He uses a pouring device that is activated by a switch that he controls. The company sells products online, at various local fairs and at the inn.”

My Visit/History of Purely Patrick:

I met with Patrick, his mother, and job coach, mostly in his bedroom/ work space.  Patrick’s mother is an occupational therapist by training and worked in Baltimore, MD for many years. His parents decided to make a change and searched to purchase an inn in the northeast.  They purchased the Brass Lantern Inn and moved to Stowe, VT in December, 2009. Patrick was 19 years old when they moved to Stowe and he started at Stowe High School. He is considered to be “one of the 25 most disabled people in Vermont.”  Mother notes that in Baltimore, individuals like Patrick were filling plastic bubbles (packages) with toys (for vending machines) at a school for the blind, putting labels on products, and putting tops on eye droppers (Mom shared her feeling about this program with me by saying, “Boy, shoot me if you make me do this kind of thing!”)  She didn’t want to see Patrick doing this type of work for the rest of his life. In Vermont, an option for Patrick was to attend a medical day care center, but he would have been with people of all ages and abilities and his specific needs wouldn’t have been met (“It is very group oriented and they will do a craft activity or movie but will do the activity hand over hand without accommodations for a child who is blind”).   Mom considers her family to be lucky to be in Vermont, in terms of services offered and due to what she describes as “tiered funding.” Through Mary Anne’s involvement on the board of the Lamoille County Mental Health Services, and through good advocacy, she was able to secure 25 hours a week of job coaching services, and is able to split the time between two wonderful, long-term coaches, Carrie (who was present at our interview) and Miranda.  They also receive 28 hours a week of respite care, and there is an adaptive transportation fund, which provides for an adapted van and related products and services like snow tires and inspection.

Mary Anne was an important resource to the school in planning Patrick’s curriculum and vocational training.  Mom carefully considered what Patrick could do and observed that he can make (what she calls) “hand farts,” a movement he does with his hands.  She then asked “What can he do with the movement to make it vocational? Why can’t he mix bath salts in a zip lock bag?” Patrick has a pouring device where he hits a switch and it pours raw ingredients through a funnel into a container.  He began making bath salts, and his job coach insured measurement accuracy. The bath salt containers sold for $1 at the Inn, the school for the blind, and other locations. Then, such salts were banned as children began abusing them through snorting.

“Then came the dog biscuit phase,” reports mom, which was easier than baked goods due to different health standards (for dog biscuits) “but it was too moist.”  Patrick would make it known that he didn’t like touching the dog biscuit dough. He was using a cookie cutter which needed hand over hand, so it was not easy for him.   Plus, baking at the inn’s kitchen had a stench. Mom maintains her good sense of humor and observes, “We had contraband bath salts, and he was not enjoying dog cookies…”

Mary Anne had hired a graphic designer, Sally Stetson, around this time to do some work for the inn.  She designed business cards, shirts, etc. Mom shared her efforts to create the ideal job and product for Patrick to work on.  “What if they assembled ingredients which people could make at home?” Mary Anne searched and found many recipes online. “It kept evolving.  I made cookies and soups for teacher gifts over the years and thought, ‘Patrick can do this!”

Mary Anne and Carrie report that their initial five products evolved in to the 22 they now carry. Two are gluten free. “It snowballed!  Sally helped us with the hang tag, banner for farmer’s market, business cards—it was all Sally!” The company continues to evolve in terms of products, presentation, shipping and support of other organizations.  “We have gotten creative with color, ribbons, a sunshine and compass theme, we have put his story on the back of the card.”

They have continued to work with an employment specialist to continue completing proper forms with the state to justify funding for Patrick’s venture.  They have created a business plan (“easy to understand, scaled down”), did a feasibility study which was presented to the state, and asked for 25 hours per week of job coaching—so there was time to swim and ski.”  Mary Anne reports that Vermont has swung to an inclusion model which requires Patrick to spend most of his time with people without disabilities. Mary Anne and Carrie report, “The state only allows one peer with a disability—by law; EVEN if the three kids with different disabilities would get along well and complement each other… if not, it is sheltered workshop mentality.  VT is very strongly against anything resembling this in any way. We comply so we won’t jeopardize his funding.” (They share details about strict guidelines and how Carrie, the community integration specialist and supportive employment specialist, works “creatively” to both comply with and push the boundaries.

Methods of packaging and shipping have also evolved, from zip loc baggies with no visual presentation, to gusseted bags with cellophane- reinforced bottoms (which they then learned will “blow up” in the nonpressured cargo area of the plane), to 16 and 32 ounce jars.  They now package and ship their products in water bottles, which can later be reused.

Patrick sells online, at famers markets and at the Brass Lantern Inn.  Thy have recently begun using Grandma Joe’s Snickerdoodles recipe which they put in a jar with purple ribbons as a fundraiser for the Vermont Walk to End Alzheimer’s.  To date, Patrck has donated more than $600. Mary Anne shares a beautiful story of a multiply handicapped girl, a spastic quadriplegic with cerebral palsy who was nonverbal and visually impaired.  She had worked with the girl, Raquel, in Baltimore in her role as an occupational therapist. The family was brainstorming ideas for a “mitzvah project” and realized she had beautiful hair which she then grew long and donated to Locks of Love, to benefit patients who have lost hair due to cancer treatments.

Mary Anne and Carrie are pleased with the success of the business but are having difficulties gaining a presence in stores.  They like the idea of being connected to others in similar businesses which employ young adults with disabilities.

From website:

​​​Don’t DIS my ABILITY

Products with passion

Profits with purpose

​Specialty food items, bringing you a taste of Vermont!

I have Cerebral Palsy and even though I do not talk, I always get my point across! My hands “see” what my eyes cannot. Watch me make these products for you…

Message from Patrick:

Hi!  My name is Patrick Lewis.  I love to listen to music, spend time outside, sing, swim, and participate in adaptive skiing.  I have even participated in several triathalons with help. I enjoy spending time with my family.  I enjoy making these products and I hope you will enjoy them too!

My products are made by the use of assistive technology.  I use a pouring device that is activated by a switch that I control.  I have the help of my mother and 2 job coaches to ensure the measurements of my products are correct.

I participate in local craft fairs and farmer’s markets.  My “Made in Vermont” products are done so with care and determination to ensure that they are the absolute best experience for my customers.

Message from my Mom:

Patrick was born 3 1/2 months premature.  He was a “fighter” and a “lover” from the very beginning.  As he grew, so did his list of diagnosis, but we soon learned to look past those and see Patrick for who he is.  Patrick has used “switches” to control his environment for a long time. He has one switch that controls his music, another that turns on his fan and another that runs his blender.  He also has another switch that is hooked up to a measuring cup on the end of a gooseneck. Patrick has used this device for years to help water the plants, help pour the milk for a milkshake, etc.  As an Occupational Therapist, I was constantly thinking “what could Patrick do vocationally, with his switches?” And then it came to me that he could make layered jars of cookies, soups, etc., using his “pouring switch”.  And thus, Purely Patrick was born. Patrick truly is a cheerful soul, who always has a song in his heart (and is always literally singing!). He is our “ambassador to life” and brings a smile to all who meet him!

Lessons Learned/Observations:

– Pendulum has swung toward inclusion (in State of Vermont) and you must be very careful to follow strict rules and guidelines (i.e. By law, state only allows one peer with a disability; rest of group must not have a disability.  EVEN if the three kids w/different disabilities would get along well and complement each other, they cannot be together. This is “sheltered workshop mentality.” Not complying can jeopardize his funding!

-Realistically assess what your child can do; look for his strengths and areas of interest:   Patrick made “hand farts”—a certain movement he does. Mom asked “what can he do with the movement to make it vocational.”  Why can’t he mix bath salts? This was the first step in Purely Patrick’s growth.

-Be careful of what you wish for in terms of interest in the company and its products.  Interest may explode. This is a good problem!

-We are true to the name of the company—“Purely Patrick” means only Patrick put it in the jar.  No other staff puts items in the jar, even if we can’t keep up with the demand.  Since Patrick is human like the rest of us, there are some days when he doesn’t want to work and is less productive.  It is about him and we have to follow Patrick’s lead. Some days, he can fill 15-22 jars in a shift; other days, only 2 or 3.

-Websites are very expensive—we would like to redo the website but it is costly.

-There are seasonal ups and downs–during seasonal lulls (January to May)—we get creative and push whatever we can:  we focus on Valentine’s Day, Easter, and push what you can whenever you can (teacher gifts, shower favors, Mother’s Day, Father’s Day, anniversary gifts, etc.);  November through the end of December is a busy month-huge orders come in for holiday gifts including doctors who order gifts for their whole staff)

-We sometimes have Patrick use his communication device at markets since this enables him to speak –and it engages passersby who wonder where the sound is coming from!

-We carry product liability insurance (lots of hands in pot—what if a thumbtack falls in to a jar?)

-Ask if Health inspection needed?  (in VT, you need it if you have 10 or more employees.  Here, Carrie the job coach handles the product and Patrick uses the switch)

-Check issues of shipping across state lines (vs selling at farmers mkt).  no need for nutrition label, fat, carbs, etc. in this case, since 1or 2. They file an FDA exemption for nutritional labeling annually (they post ingredients on top and additional info on hang tag—gluten, nuts, etc)

-Investigate shipping options to keep costs down:  shipping by US Postal Service is the cheapest method by far.  For regional shipping, a good way to ship is Regional Box A-Offered by the USPS®– Priority Mail Regional Rate Boxes are a low-cost shipping alternative for customers who purchase and print shipping labels online. Regional Rate Boxes provide shippers with a low cost mail class for packages traveling short distances. Pricing for Regional Rate Boxes is zone-based.

-Know the shelf life of products and rotate stock.  Patrick’s products have a 1 year shelf life.

-Be creative in thinking about how to spend earnings and other monies received. Remember there are equipment needs including a table, computer, and printer.  Keep a running wish list (i.e. a new tent for fairs) IF he has surplus money at end of year.

-For accounting and tax purposes, remember that anything in inventory is an asset which needs to be reported

-Know the tax laws—we pay quarterly state taxes on dog treats, bird seeds and shipping, which are taxable but not on food items, as they are not taxable.

-Even people with disabilities can be charitable! Patrick has donated over $600 to the Vermont Walk to End Alzheimer’s and has purple tags and ribbons on Grandma Joe’s Snickerdoodle cookies indicating that he donates a percentage of sales to charity.

-Company would like to find new markets.  Has been hard to get an in store presence.   

-Being connected to other people in similar businesses would be very useful.

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