Project Coordinator: Allison Baldwin

Copyright: 2019-2020

This book includes the writing and photos of the Access Granted exhibit, originally installed, and on view, at Penstock Coffee Roasters in Highland Park, New Jersey from November 2019 to February 2020. Grant funding has been provided by the Middlesex County Board of Chosen Freeholders through a grant award from the Middlesex County Cultural and Arts Trust Fund and the New Jersey Council on the Arts, a division of the Department of the State. This book, and the content therein, is not eligible for reprint without the express written permission of the Highland Park Arts Commission and individual authors.

ISBN: 978-1-09830-557-4 eISBN: 978-1-0983055-8-1 Table of Contents

Poetry and Essays

Wishes… Allison Baldwin Munjhi Zindagi (My Life) … Alim Memon Access Granted…Brianna Murray Leave a Trail…Chaz Hayden Safety: On Walking Noor to School…James Simmons and Kristen Witucki Man, the God…Javier Robles Reading Braille: A Spiritual Reclamation…Kristen Witucki No Different…Laura Watson The Space I Take Up…Lorna Hedrick Finally Understanding…Matthew Michael Menechella A Day in the Life, with Dogs…Michael Saverino Tremors…Pandora Scooter Getting There…Charles “Pat” McKenna A Glimpse into my Life of Mental Illness…Yuvonda “Vonni” DeSouza

Visual Art

Medicated…Maggie Dominick Exhibition Photos

Photography

Sophia Sobers Ryan Dunphy

*Photographs of Chaz Hayden, Charles “Pat” McKenna, Matthew Menechella, and Lorna Hedrick were selected and submitted by the writers. All photos of Kristen Witucki were taken by Michael Porter, except for the photo of her reading the Braille book to herself, which was taken by Damien LaRock. Photos of Brianna Murray were taken by Allison Baldwin.

*Opening reception photos taken by John Marron and various attendees. Allison Baldwin

Allison is standing on the bridge in the park. Her red hair is partially covering her face and she is looking down with eyes closed. Allison is sitting in a car with her body half out of the front door. She is bent over, and in the middle of folding her walker. The walker can be folded by pushing the two side buttons in so that the walker collapses into itself. When folded, it can fit into the backseat or trunk of most cars and other vehicles. A picture of Allison and her walker, folded all the way down. To reopen the walker, all someone has to do is pull on the read handles until the walker fully elongates and clicks in place.

Wishes

1.

There is a girl sitting in a white-walled room surrounded by stickers and books and bedclothes. Five unsharpened pencils. She adds lines and crosses and hearts to the negative space. She crumples and folds and crumples and folds. Throws everything but herself between everything but herself. She keeps the doors closed, never needing a lock, even when she asked.

It would be too dangerous, they said. What if something happened to you, and we couldn’t get to you, they said.

There are Justin Timberlake, Hanson, Spice Girls, and Britney Spears posters adorning the walls, but not for long. I have never liked portraits. The way they stare. Give me the eye as if I am wrong.

I knew I perfected that expression somewhere.

I do not yet have a dog.

Instead, I am surrounded by cats. A fresh notebook page stares up at me. I have already filled up two. Writing came quickly in those days, mostly because I was writing wishbones and not roots. I do not like the way they stare.

What if something happened to you and we couldn’t get to you, they said.

Something has already happened. There is no need for a lock.

2.

There is a girl sitting in a purple-walled room with a border of stars.

Make a wish. Make a wish. Make a wish. But don’t tell anyone.

That you feel stuck.

You wish to leave, but your body is stuck in awkward positions, your mind only follows.

I see you And I am sorry.

I am sorry that this family does not feel like home. That this body feels like a hand-me down, all the best parts used up by the time it got to you.

I am sorry that every request feels like a sword to the chest.

There must be more than this provincial life.

There is more. We have seen it. We have made sure of it. Right now, though, You must sit in the border of stars Learning how to make wishes while I keep watch.

3.

I am a young woman sitting in a taxi-cab that smells like smoke and pizza crust. By evening, that taxi will become an Uber Silence: blaring horns Sunrise: street lights. Everyone is rushing to nowhere and I am resigned.

No matter how well I hide the questions follow me.

“Is it hard? It must be hard. Not having anyone.” “Does your family take care of you? Do they help you?” “Would you be willing to marry someone so they could help you?”

I am a woman sitting in a taxi-cab at sunset and the hardest part about my day is this conversation.

Is it hard to be alone? No. Is it hard listening to you assert why I shouldn’t be? Yes. Or hearing you repeat your question like the answer I gave wasn’t good enough and you deserve a better one. It’s been a long day and I just want to get home.

I am no longer that girl sitting in the purple-walled room with the border of stars.

But I wished to be here In this taxi-cab at sunset. Protected in a gridlock of salt and city lights.

The hardest part was getting here. Realizing that other people’s trust didn’t matter. Only my own. Allison is in the car, on the way to her next destination. One of the challenges of living with her disability, Cerebral Palsy, is that she cannot drive and must rely on car services, such as Uber and Lyft, or family and friends for transportation.

A full body picture of Allison walking in the park. Because her walker is a “posture control” walker, it goes behind her instead of in front. The walker being behind her, plus the four-wheel model allows for more freedom of movement when walking. Allison is standing in the gazebo at the park. She is singing “Landslide” by Fleetwood Mac, one of her favorite songs. Singing is both a joyous and healing hobby for her. Alim Memon

A black and white photo of Alim, sitting in his wheelchair, staring up at a large staircase that is blocking his path.

Munjhi Zindagi (My Life)

This life is full of colors and experiences. These colors and experiences are what makes this life beautiful. Not everybody is fortunate enough to enjoy this beautiful life. I do my things my way, but I am excluded. I do the best I can, but my efforts don’t count. I am productive, but my productivity is inferior. I am capable enough, but at the same time I am “handicapped”. Diversity is what makes us great. But why doesn’t my diversity count? Our qualities are what makes us standout, but my qualities are excluded. Because I standout while sitting down. Because I show up with a great attitude. Because I do things differently. I am accomplished but my fundamental infrastructural needs are superfluous. I am strong but I am fragile. I am competent but I am subpar. I am great, but I am not that great. My life is inspirational, but that’s only the epitome of it. I achieve things my way, but my way is not that way. I am involved, but my involvement is unnecessary. I show up but my appearance is expensive. I am consistent, but my consistency doesn’t count. This life is full of experiences and colors. We learn new things every day and evolve. But the world still operates with one shoe fits all philosophy.

This is Munjhi Zindagi And I am just trying to make most out of it.

A color photo of Alim in his wheelchair, sitting alongside a house, near a staircase with railings. People with disabilities miss out on participating in many public activities when access to buildings is denied.

An angled, color photo of Alim sitting in his wheelchair, looking up at a long staircase that blocks his path. Many places with long staircases are inaccessible to people who use wheelchairs and other assistive devices. Brianna Murray with retired guide dog, Hopps

Brianna standing with her retired guide dog, a black lab named Hopps, who worked with her up until the end of the project. Whenever Hopps was in her harness, she was ready to work.

Access Granted

Entering an Uber, guide dog at my side A dog? No. Access denied. Walking into school, craving to learn Blind? No. a degree cannot be earned. Speaking to peers, trying to fit in Disabled? No. isolation will begin.

Fighting back tears to hide the pain Obscuring the scarring that still remains Stumbling through maturity, isolated and alone Pressured to pave the way, destination still unknown. Stress pulling me down, like a hundred-pound weight. Struggling to be proud, and stand up straight

Wishing for invisibility, to disappear They’ve repeatedly made their judgements clear Not sure how to dig myself out of this trench Muscles tightening, fists clenched Joining the war in my weakened state Because “Disabled” means having to prove you’re great

Fighting for my rights and taking a stand Learning how to advocate and demand Pushing and pushing to get what I need Wanting to hold back but taking the lead Teaching others to do this too Because advocacy can never stop with you

Going to college, getting a degree Because disability does not define me Becoming independent, traveling by myself Because only I define my physical health Using a guide dog, standing proud Because together we conquer any crowd

People tell me what I can’t do But I’m not afraid to learn something new I’ve learned to love who I’ve become To push away judgement and overcome To take their denials and make it right To prove victorious in the constant fight

Hopps (now retired) will always be a trusted family member and animal friend. During her working years, Hopps helped Brianna navigate her surroundings and gain independence. Even now, she always has a smile on her face. Chaz Hayden

Chaz is “leaving a trail” as he travels on the road in his power wheelchair. He says his chair helps him “live his life to the fullest.”

Leave a Trail

I go where there is no path. But I think about my feet not being able to leave a print in the ground. How will anyone know where I have been if I leave nothing behind? My wheelchair tires could do the trick but they tend to get stuck in the mud. Instead, I have to stay on the unyielding pavement and once I pass there will be no trail.

But that is not true.

Life is not about the visible breadcrumbs that are dropped during our journey. If that were the case, my trail would be covered with old wheelchairs, doctor visits, and hospital bills. I will not allow my path to be defined by the redoubtable experiences I do not wish upon others.

Those events are not me and I not they.

The trail is different for every traveler.

I cannot tell you how it feels under your tires or where it leads. But I assure you I am safe.

Patches of light and dark will shift along with the steep curves and hidden valleys. Follow the tracks that I have left for those who think the obstacles are insurmountable.

My breadcrumbs are stories of how to break the status quo.

Defy expectations. Embrace being different. Create your own path.

Don’t get me wrong. Sometimes I feel so close and yet farther than ever before. I think: If only my wheelchair had a little more battery.

And then I can get there. Chaz is on the road at dusk, moving ahead to his next destination, not looking back. Disability is not an excuse, he says, but a way to make a new a path. James Simmons with son, Noor

A black and white photo of Highland Park resident, James Simmons getting ready to cross the street to take his son Noor (in wagon) to school. This is also the image on the book’s cover.

Safety: On Walking Noor to School written with Kristen Witucki I pull My son to school in his little wagon, Lunch bag Dangling From its handle.

I walk My son to School With my cane, Feeling For obstacles, A sign, A Trash can lid, A car parked across the sidewalk.

Noor, which means light, Is our adventurer. He has thrown his shoe. He has tried to escape. What will he do? What has he done?

I walk My son to school With my cane, Listening For oncoming traffic. The perpendicular brings me to a stop. The parallel tells me to hurry, Unless a Car turns On red. Yet we still need to hurry Before the oncoming surge.

One day, I walked My son to school With my cane, And a woman asked, "Is that your child?" Why would A black man Walk a light child? Why would a blind man Pull that heavy load?

I walk With my son Listening As he chatters About birds Or a ball Or the sun In the sky.

Then I pull The wagon Home Without him. For a moment The weight Is gone.

I walk home With my cane, Listening, Feeling. A colored photo of James walking his son, Noor, (in wagon) to school. Here we get a clear view of James’s walking cane. The walking cane helps James “feel” what’s ahead, specifically changes in terrain, such as curbs, dips in the road, or foliage. Javier Robles

Javier and his students at Rutgers manage a beehive near campus. Javier’s submission to the Access Granted anthology touches on the interdependence between humans and other animals in nature. When we cannot take care of our natural habit, we cannot take care of our bodies. Here we see a close up of some of the bees that Javier and his students take care of near the Rutgers campus. Bees have more recently been considered an endangered species, so Javier and his students handle them with the upmost care, in an effort to ensure maintainence of the food chain.

Man, the God

This story started long ago. When our fathers and forefathers of beast and insects took control. I shall make them better, bigger and rain upon them genetic gold. They toiled and tinkered, like the Gods. They split and spliced and found genetic secrets long hidden. Every atom, every molecule, was ordered and reordered. Every grain and seed revised and devised. The new seeds and trees were named for their creators. The creators branded and marketed their creations. Like designer bags, seeds were branded so the master could always know were his creation was.

They toiled in their labs, and created creatures big and small! They bloodied their white aprons, and prayed on altars made of glass and gold. “Man delivered us from darkness and made our scalpel true and fast” And man, re-created all the creatures of the Earth in his own image. And man, made all creatures bow to him. I have made these things and I am God! I can give life and take life! There shall be no other God but Me! One day, a child of the new and knowledgeable god asked,

Where are all the bees, elephants and rhinos? And man, as he always did, pointed to his creations. Do you not see, the giant corn? Are you blind to the fields of meat?

Yes, said the child. I see.

But where are the things you did not create? The whales and sharks? The Tigers and the chimpanzees? Where are those things entrusted to you?

They are no more, said the man. Progress requires sacrifice! They are no more!

Then man sat back, and saw what he had created. It was not good. It was devoid of life. It was dark and hollow!

The air was silent of birds and bees. The sea, a saline pool of sludge and slime. The stars were littered with progress. Man’s eyes were opened for the first time, but Earth was blind.

An angled shot of Javier and students handling the bees. In addition to managing the beehive, Javier also teaches a class in Disability Studies. Javier is checking up on the bees, making sure all is well. He uses his power wheelchair to pull directly up to the bee tray. Kristen Witucki with children, Langston, Noor, and Karuna

Kristen works diligently at her computer. A mother of three children, she works from home as an educator to blind and visually impaired students. She is also the author of two young adult novels, Outside Myself and The Transcriber, both of which show representations of living life with blindness and visual impairments.

Kristen is reading a board book to her youngest child, daughter Karuna. Kristen says that reading is not only one of the most rewarding things for her to do for herself, but also to do with her children.

Kristen is reading to her middle child, son Noor, who also rides in his blue wagon as his father takes him to school in the mornings. His name means “light” so his one-thousand-watt smile is no surprise. He served as a terrific assistant host on the exhibition’s opening night as well!

Reading Braille: A Spiritual Reclamation After several years of writing on my bed, I've moved into a house with a small writing room of my own. I've worked there for almost two years, and slowly it has gathered the old and the new: a wooden rocker my mom fed me in as a baby, a desk made of a sewing machine table, an old hutch from a friend which holds my childhood knickknacks, the harp I never learned to play. The room is mostly off limits to my children, who sometimes treat china like rubber. The almost-tranquility is so rare, so intoxicating, that it took me almost two years to figure out the missing element, braille. * * * "This is Karen Messick. May I help you?" Karen, the children’s librarian at the New Jersey Library for the Blind and Handicapped, was a mainstay of my childhood and adolescence. "This is Kristen," I said, settling cross-legged on the kitchen floor and twisting the phone cord around my finger. "Hi, Kristen, how are you?" Karen always recognized me immediately. "Good," I said. I'm not sure if I ever asked how she was doing. "I need a book ...” And our conversation would take off from there. Sometimes she would look up a book I needed for school or an author I wanted to try. Other times, she'd read me several descriptions of books, and I'd listen and agree or disagree. She never accused me of borrowing too many or belittled my choices. She just connected me with literature. As an adult, I would nominate her for a New York Times Librarian of the Year Award, and she would win one. It was the least I could do. * * * English is my native language; braille is its matter, my heart's unfurling. I learned it when I was five; my younger brother already knew how to read. Now I, too, could read my newly acquired knowledge aloud to my family or escape into my imagination. Braille gave a structure and a visceral beauty to language. In certain situations, braille became a secret code. I never needed to hide my braille diary. My two closest friends even learned to write in braille with slates and styluses, so we could pass notes in school. My closet was filled with braille books of my own, while boxes of books from the state library sat in tall, teetering towers around my bedroom. My mother joked that I would need to be rich so I could have a house with rooms for my books. Sometimes reading braille felt isolating. I could almost never read a letter or check out a book from my local library. But for the most part, braille was independence and freedom. * * * "What is your favorite book?" I asked my next-door neighbor. "I'm looking for something new to read." I had had it, for the moment, with contemporary fiction. "War and Peace," she answered. That made sense. She was a Russian literature professor. However, I didn't think my brain, four months post-partum on baby three, could handle it. (Maybe it never would again.) "I need to start smaller," I said, "Anna Karenina." And I began to read the premier translation in audio. * * * The golden glory of braille took a tumble when I became a teenager, as many things do. More and more textbooks and literature were only available—meaning cheaper and smaller—in an audible format. I discovered that once I strayed out of the children's and contemporary young adult genre, I could not actually own the hard copy braille books I wanted. I could borrow James Joyce and Jhumpa Lahiri forever, but I could not hold my own copies in my hands without paying several hundred dollars per book. And braille displays, which gave me quick access to everything from novels to class assignments, only allowed me to read while I was conscious enough to hold them. I couldn't drift off with one without risking ruining several thousand dollars' worth of dots. Curling up with my own good book was no longer an option. Most worrisome of all, in 2016 the USA officially switched from EBAE, English Braille American Edition, to UEB, Unified English Braille. I support the adoption of a uniform braille code around the English-speaking world, and I've officially transitioned, but after thirty years of reading Braille one way, I feel slightly off-kilter, especially because many books still remain in the old code. I was recently startled to discover that all of these factors have made Braille feel slightly alien. Audio has become so much faster for me that I now do everything from corresponding with friends to procrastinating on Facebook to reading and writing stories and novels audibly. Although I can and do teach braille, I have lost touch "pun intended" with the structure of language in my personal life. The great exception is reading books to my children. Whether I'm reading a board book to my baby or toddler or an electronic braille file of a chapter book to my eight-year-old, sharing books with them transports me briefly to childhood, to the jeweled way language felt then. But for myself, I needed to reclaim Braille. * * * "New Jersey Talking Book and Braille Center, this is ... may I help you?" My throat tightened as I realized that I had missed her name, that I did not need to learn her name. If I called back in the future, I might not reach her again.

"My name is ...” I spent a minute verifying my account. "and I need a book." "Which book?" This was not the time to ask what this stranger had read lately. "Anna Karenina," I said. "You are the second person to ask for that book today," she said, making me wonder about the life and circumstances of the first. "I'll get it right out for you." "Thank you," I said and hung up. Once again, I have a pile of boxes from the library. I'm reading an out-of-date translation compared to the audio that's available. I'm moving leisurely through the book, not so much because I want to savor it but because four months later, I'm often still fatigued. But flipping back the enormous cover, stretching out and losing myself in Tolstoy's complicated families, luminous exterior landscapes, and deep and sometimes startling interior insights has brought me home. Reclaiming braille for myself gives me the intellectual and spiritual space I need to live as an individual and to return to reading with and beside my family.

Kristen reads a Braille book to herself. In order to read, she needs to feel the dots under her fingertips. In Braille, each letter, or series of letters called contractions is represented by a combination of dots. Fun fact: Braille embossing takes about three times as much paper as print type.

Kristen reads to her children, Karuna and Noor with Braille print books, and to her older son, Langston, using electronic BRF (braille formatted) files. Reading is a great way to enjoy some calmer snuggling time and to balance personal pleasure with family communion. Laura Watson

Laura uses the NJ Transit train to travel to New York City, where she attends school for Image Consulting at the Fashion Institute of Technology. Over the last few years, Laura decided to take that leap of faith and pursue her “passion for fashion” by starting a home-based fashion business, which she runs out of her basement. Here she is, posing with her laptop and racks filled to the brim with her favorite designs.

Laura also runs her business by working from this desk. Every boss lady needs a perfect setup and this is hers.

No Different

I am no different than you.

Firstborn, Laura Blair, parents overjoyed

I am no different than you.

Doctors, testing, searching for answers Diagnosis: Spinal Muscular Atrophy Weak muscles, lack of movement I will never walk.

I am no different than you.

Smart, social, ability to form bonds Despite the diagnosis, treating me just like any child was how my parents chose to respond

I am no different than you.

I can’t talk with my hands or speak over people But my expressive eyes and faces are enough to tell a story. All through school with nurses at my side. With my newfound freedom, my wheelchair was my ride Choir, drama club, girl scout, student council president Some kids would stare and have lots of questions But as soon as they would talk to me, friends we would become fast

I am no different than you.

Went away to college Dorm, studying, sorority sisters Couldn’t go to class by myself or take notes without help Navigating a world not always set up for me I never look for pity.

I am no different than you.

Parents who pushed me to always pursue my dreams wit, confidence, independence I am a woman with a disability.

I am no different than you. I’ve never been able to brush my hair Or put makeup on my face I could never lift my arms To give a loving embrace Pink, glitter, style I’ve always been a girly girl

I am no different than you.

Pursing my passion Entrepreneur, fashion school in the city Commuting on the train Going to visit friends Putting myself out there Dating to find someone special Some guys might not give me a second glance Still I dare to take the chance

I am no different than you.

Challenges, obstacles, roadblocks Unfair assumptions made People see my wheelchair first Life with a disability can be trying I am no different than you.

Girlfriends, laughs, faith That’s what gets me by Energetic, twentysomething, staying true to who I am I live my life just like everyone else

I am no different than you.

When Laura isn’t working, she can be found hanging out with friends and enjoying life, just like anyone else. She particularly enjoys coffee and cocktails.

Laura is on the dating scene and is looking for that special someone. Despite what others in society may think, she wants to show that she is “no different” than you. Lorna Hedrick with guide dog, Yva, and son, Atlas Lorna loves to express herself by changing her hair often. Her hair was blue during the project, but now it’s magenta!

This is a picture of Lorna’s walking cane folded in her bag, something she says she misses because she was “able to hide it.” Being disabled can sometimes be hard because we can’t always hide it, and we can’t always control what people see and how they react. Telling our stories is one way of reclaiming that power.

The Space I Take Up

I am blind But you’re looking right at me! You exclaim I’m looking right through you.

You ask me what my dog is for I tell you aesthetic And you believe me Sometimes I wonder why people are so dumb And then I remember I am people too

I get overwhelmed in the grocery store There are so many things to look at And I see so few of them

People ask me questions as if the panic in my eyes isn’t palpable

See, ha, when you look at my eyes, my dog, my eyes I see you. Because I am not blind

“There’s a difference between blind and severely visually impaired”

I am tired of explaining my existence To someone who’s just waiting for a chance to pet my independence Because to you she’s a dog in a grocery store But to me she’s all the difference in the world

I don’t get invited places anymore I’m not sure if it’s being a single mom Having a four- legged prosthetic Or the space I take up

I miss my cane because I could hide it The way I haven’t been able to hide since I couldn’t play ghost in the graveyard as a child And didn’t understand why I could never find anyone

You ask why my glasses don’t help Like it’s an easy answer To explain clarity versus visual field while I’m trying to pick out spaghetti sauce And keep an eye I can barely spare on my son While my dog sniffs a passerby

Which, of course leads them to believe they’re entitled to touch a piece of me A piece of me strangers feel is for them

I don’t look blind is a curse My yellow sunglasses are the wrong shade for you And my family catches your opinions Because we take up the entire sidewalk On my own I am big And when you add a dog on one side and a five year- old on the other There’s no room for you A picture of Lorna’s guide dog, a yellow lab named Yva, and her son, Atlas: the two most important parts of Lorna’s loving family. Matthew Michael Menechella

Matthew is looking out into nature, contemplating life.

Matthew practicing his superman pose, a pose that brings him power and positivity as he takes on the day and creates a fulfilling life.

Finally Understanding

Having a diagnosis of Bipolar For me has always been a difficult thing to deal with At least up until the past few years Where it has become significantly easier to deal with

Some days I feel sad and melancholic On those days you will find me with a cloud raining over my head As if I have faded into gray and depression While the rest of the world spins around in color and beauty

Some days I feel mediocre and middle of the road On those days you will find me tranquil and peaceful Yet at the same time pensive and in deep thought About my life and where it is going as well as where I have been

Some days I feel happy and joyful On those days you will find me being silly and playful Very much like a new puppy exploring his new home for the first time In an absolute state of bewilderment at how good my life actually is

And yes, while I have had a hard life at times It was all due to my choices at those given times Choices made because of the Bipolar having a firm grip on me Choices made because I felt I had no choice but to make them

I have grown in the sixteen years since I have been diagnosed Going from an adolescent angry at the world To a man who is learning to make decisions in his best interest For I am on a path to loving myself and all of myself at that

Finally understanding that I am worth loving Finally understanding that I am worth living Finally understanding that living with Bipolar is nothing to be ashamed of Finally understanding that I am no one to be ashamed of

Matthew enjoying the sunshine while sitting on a bench. He is wearing a Godsmack t-shirt in honor of his favorite band. Matthew is standing in front of a tree, with the shadows highlighting his face. Michael Saverino with service dog, Webster

Michael and Webster take a walk in the park, near the jungle gym. Webster stays at Michael’s side in order to watch out for any obstacles or in case he needs assistance during the walk.

A Day in the Life, With Dogs

My name is Mike Saverino. I am thirty-two years old and have Spina Bifida. Because of this birth defect I have had more than thirty surgeries.

I also have a service dog named Webster. He is my second one; I graduated with him in August 2016. My first service dog’s name is Akirra; I graduated with her November 2007. They are both the lights of my life; I wouldn’t be where I am in life without either of them.

Both of them have given me not only my independence, but my whole life back by opening doors literally and figuratively. Webster knows over fifty commands.

In my spare time I enjoy volunteering with the Green Brook Fire Department. I have been a member of the fire department for the past sixteen years and currently serve as the Vice President. When I am checking off the supplies on the truck, I don’t have to worry if I drop something because Webster can retrieve it for me and do a “lap” or “step” command to give it back to me.

I also enjoy playing sled hockey. My favorite thing about the sport is the feeling of being able to forget about my birth defect and move freely on the ice. Sitting in my sled, gliding across the ice, while holding my cut down hockey sticks in each hand, with a “pick” on the end so I can pick up speed and then flip the stick quickly to try to hit the puck into the goal, is the only time I can be out of my chair. It’s an awesome sight to see: wheelchairs empty and lined up against a wall while the “disabled” players get to be out on the ice just like the able-bodied players. It’s a way to “belong” on the ice and be a “part of a team “even without the use of our legs. It’s a feeling we share that most wouldn’t understand.

I also enjoy volunteering for the County Animal Response Team where I have been a member since August 2017. Webster always comes with me to the meetings and helps open the doors or carry things. When we are in a meeting in one of the classrooms, Webster quietly does an “under command” at the table where I am seated and will snooze away until I let him know it’s time to work.

One example of a typical day: I decided to take a “roll” to my neighborhood Walgreens for some much-needed allergy medication. On the way, my tire decides to catch the only groove in the road along our two- mile adventure. I’m not worried though because I know my side kick Webster will pull me out of the groove without hesitation. As I’m rolling around the store, I am approached by a woman asking if she can pet Webster. I tell her “not now, he’s working”. She then proceeds to tell me how rude I am and all she wanted to do is pet him because he looks sad. I now have to stop and breathe because this scenario happens more times than not when we’re out in public. I politely tell her that by petting him, this puts him into a “playful mode” which distracts him from me and can potentially pull me out of my chair. When we get to the counter, the only register open is the one with the higher counter, but again, with Webster I’m not worried because I give him my debit card, and he happily does the “up” command and puts his paws on the counter with the debit card in his mouth. On the way home he will carry the bag, so that I can push my chair. This is such a simple task for most, but without Webster it wouldn’t be possible for me to independently pick up my own allergy meds.

A front facing portrait of Michael and Webster. Michael is holding on to Webster’s harness and Webster is getting ready to sniff the ground. Pandora Scooter

A black and white photo of Highland Park Arts Commission Chair Pandora Scooter’s hand, showcasing her tremors. tremors My tremors tremble my hands my fingers wag out of beat to the rhythm of my mind. I try to take control but the tremors resist all attempts to calm to focus to be still. To be honest, I kind of like the tremors they make me more intentional more aware with my hands and my fingers and they also show my age, which I appreciate like rings in a tree trunk or climbing vines on a brick house. I’ve been here a while, you see. And time and society and disease have taken a visible toll on me thank goodness.

Oh and by and by…

My tremors are caused by a pre-arthritic condition and lithium to balance my bipolar. Sometimes people worry about me and my tremors but i just thank my lucky stars that no one ever wants me to take pics or vids of them with their camera phones! A color, angle shot of Pandora Scooter’s hand, showcasing her tremors. Charles “Pat” McKenna with son, Scott

Charles and Scott stand on the rocks near water. They are ready for a swim! Both are wearing matching bathing suits and Scott is wearing a swimming vest.

Getting There Vermont in July, beautiful days, and perfect nights. A time for camp fires, and swimming, and long hikes through the woods. It’s one of my favorite places.

Last summer, four of us on a short hike, my son, my relatively new Seeing Eye dog, a close personal friend, and myself. It was hot, the July sun hammering from above, the distinctive call of a Red winged Black Bird close by. My son running ahead, along the trail. He shares my love of the outdoors and gleefully called out everything he saw. “Daddy, there’s a butterfly, and it’s orange, and black, and orange. And there’s a spider web, and the spider’s there, and it’s looking at me. And there’s a bug, and it’s black, and yellow, and has a black spinner. And are ants nice?”

He is four, soon to be five. He’s very aware of my blindness, and his determination to describe everything from plants to wildlife to me is quite touching. Last spring, he learned to identify different flowers, so on our walks to and from daycare, he’d give me a running commentary on what we passed. I got some great descriptions.

“Daddy, it’s so beautiful! To the left, the outer left over there, it’s a yellow daffodil, with an orange propeller.”

Or, “This Tulip is more purple than the last flower, or would be if the last one had been purple, which it wasn’t. And can we plant more Hyacinths?” Another memorable description was from last winter, from the other side of the house I hear, “DADDY, OUT THE WINDOW, YOU MISSED IT! OUTSIDE YOUR OFFICE WINDOW WAS THE MOST BEAUTIFUL BIRD! IT WAS A RED HOODED NECK- PECKER! ARE THOSE RARE!?”

The trail begins to descend sharply, large trees lean close. Thick foliage blocks the sun, the air becoming noticeably cooler, the ground a dynamic multitude of roots, and stones, and slick services. My guide-dog’s been magnificently well-trained and together we navigate the uneven ground. More stones, and roots, and it’s cool, and pleasant. I detect a scent I can’t identify, and hear a distant bird song I don’t know. I can hear my son, down the path ahead, then off to the left, climbing over rocks, calling out as he finds a note-worthy pebble, or leaf, or bug.

“Daddy, I saw some bees. They’re like the bees by my school. If you bother the hive the Queen will shout, “SEIZE HIM!! And they’ll get you!”

And, “to your left, right now, are a bunch of rocks, all together, making one big rock, do you think wolves stand up there?”

“Well, if I were a wolf, that’s where I’d want to stand.”

And, “Daddy, I saw a squirrel, I think he’s looking for acorns and coconuts.” “I think just acorns, I don’t think they’re looking for coconuts. Coconuts aren’t found this far north.”

“But, Daddy, if you don’t look for them, they won’t be found.”

I listen to his explanations, and his descriptions, and his questions. It makes me happy, and slightly wistful. In him, I can see reflections of myself. In him, I can hear echoes of the child I once was. And in him I can feel the presence of the boy I never became. Around the age he is now was when I fell ill and became blind. Changed irrevocably by medical circumstance still not understood, the dream of the life I did not have sometimes still seems to linger in the periphery. Fantasy, and wonder, and daydream dissipating, but never completely gone. Like mist in the morning sun that persists in the hidden shadowed places of my mind. Had I not become blind how would things have been, how would they have turned out? Would I have had the opportunity to try playing tennis, appreciate a work by Monet, drive the Pacific Coast Highway, see my child smile at me for the first time? I’d like to think so.

I am proud of my accomplishments, and very happy. My life isn’t bad or worse compared to the fantasy alternative, but it is different. This pride, and contentment, does not keep me from occasionally wondering, what would my childhood, and my life, have looked like had things been different. An acquaintance told me once that I have still not accepted or adjusted to my blindness. I suppose that’s possible. But maybe such loss, and acceptance, is a journey, requiring the wisdom, and experience of a life time. Maybe I walk that path still, living, and learning, and now, experiencing the world anew through my son’s eyes.

“Daddy, stop, you need to hear this, ok, so, way up ahead there’s a river, and it’s beautiful, and there are rocks, and some of them are really big. Wolves could stand on them, and, the best part, there’s a waterfall! Do you think there’s treasure and dragon bones behind it?”

“Let’s find out.”

Ahead of me the path opens, the ground drops sharply away, we’ve reached the river. To my left the distinctive roar of the waterfall we’ve come to visit. My friend minds my dog, as my son and I walk as far as we can on the slippery round stones. He holds my hand. Then, it’s time to swim. Though the water’s calm, he wears a floatation vest just in case. He loves the water, just as I do, and did at his age. Keeping hold of one of his vest’s straps, I swim towards the sound. The waterfall is ahead, my friend, and my dog behind at the water’s edge. Close by, the music of splashing and laughing from other visitors enjoying the day. High rocky formations loom to either side, close, then closer, channeling the water’s roar. “Daddy, this is amazing!” I agree, and am thrilled he thinks so. I hope it’s a moment he remembers: that hot July day in Vermont when his blind dad swam him out to a waterfall on the Mad River. The going is not difficult, the water calm until the last six feet. Turbulent, and choppy, the force of the current a sober reminder of nature’s power. It’s loud, so loud, and overwhelming, impressive since the waterfall itself is not that large. I climb on to some rocks, working against the torrent. I pull my son up after me, and we’re in the pouring water together.

“SO,” I shout over the roar, “WE DID IT, WE TOUCHED A WATERFALL! HOW DOES IT FEEL?”

“Cold, it’s really, really cold!” Charles and Scott are enjoying a swim by the waterfall. Charles is holding Scott in his arms. A rock formation is to their left, and the waterfall is behind them and slightly angled to the right. Yuvonda “Vonni” DeSouza

Vonni is walking on the bridge at the park. She enjoys walking here, for exercise, especially in the autumn months. Vonni goes to Shoprite, perusing the shelves, to get the best deals on healthy food and beverages, like vitamins, green drinks, and organic iced tea. She tries to engage in holistic healing as much as possible. Vonni is a master at shopping, and because she always knows about the best deals, she never shies away from recommending products or giving advice to friends and loved ones.

A Glimpse into my Life of Mental Illness

It's sleeping a minimum of ten hours a day; to allow the tranquilizing effects of my meds to fade away.

It's waking up foggy, allowing the feeling to dissipate; sitting on the couch as I patiently wait.

It's consuming a green drink in order to become energized; it also helps my body to get cleaned and alkalized.

It's drinking a large cup of coffee to further boost my energy, choosing brews and creamers with ingredients that are healthy.

It's drinking alkaline water with a pH of 9.5; it helps to offset acidity in my body and keep it alive.

Getting this water is no easy feat; I lug several bottles from dollar stores as their prices can't be beat.

Transferring them from the car to my home is a laborious task; I live in a second-floor unit, so help from family, I always need to ask.

They then get placed strategically on my dining room floor; this exhausting process takes place every month or more.

Apart from this, I enjoy an organic salad with my meal; buying a sixteen-ounce tub is usually the best deal.

I purchase healthy iced teas, whichever is on sale; Honest is organic and fair trade, so it's my favorite without fail.

I take supplements like probiotics, enzymes and vitamin D; in hopes that my immune system can be as healthy as can be.

I choose health and beauty products free of chemicals and dyes; avoiding harmful ingredients is essential and wise.

I surround myself with people who bring love, light and positivity; I avoid toxic people who drain energy from me.

I perform at open mics regularly, where my passionate poetry takes place; I strive to bring hope, inspiration, and awareness in this space.

I take strolls in my favorite park when the weather is great; natural environments are therapeutic to me; gyms I typically hate.

Last but not least, my relationship with GOD gives me hope; no matter how bad the anxiety disorder, he always gives me strength to cope.

These tools help me to live holistically around my prescription medication; it is not easy, but the key is dedication.

I deviate at times, as I have good and bad days; while my life is not perfect, this lifestyle helps in tremendous ways! Iced tea is one of Vonni’s favorite drinks. In an effort to limit sugar intake, she consumes brands like ‘Pure Leaf’ and ‘Honest,’ which are just a tad sweet. Her favorite flavor is peach. Vonni also drinks alkaline water regularly. It’s normally hard to find, but one day she found a bunch of bottles at the dollar store. The deal was so good, she couldn’t pass it up. She believes her total haul from that day was 65 bottles— enough for herself and her family too! Maggie Dominick

Visual Artist and Arts Commission member, Maggie Dominick speaks truth to the stigma of mental illness with her moving piece, Medicated. The words within the painting read, “If you only like me while I’m medicated, you don’t like me.” The visual is an open mouth with a tongue sticking out. A circular, white pill is set atop the tongue. All background color is purple. Access Granted Exhibition November 5, 2019

The crowd at Penstock listens intently as writer Matthew Michael Menechella shares his poem, Finally Understanding. Project Coordinator and event host, Allison Baldwin prepares to introduce the next reader to the crowd. Chaz Hayden, local writer from Princeton, New Jersey, prepares to read his poem, Leave a Trail, on the microphone.

Highland Park resident, Charles “Pat” McKenna uses a Braille machine to read his short story “Getting There” to a captivated audience, with guide dog Finn at his side. Disability Activist and writer, Javier Robles introduces his parable Man, the God, that he asked his wife, Amy to read on his behalf, because, in his words, she “has the better voice.” Highland Park newcomer, Brianna Murray reads her poem, Access Granted, named for the project, using a print out on Braille paper.

Access Granted photographer, Ryan Dunphy is all smiles and excitement as he showcases the event program (with Access Granted writer James Simmons and son Noor on the cover!)

The Highland Park Arts Commission would like to extend a special thank you to Carol Sohn, Penstock Coffee Roasters Business Strategist, as well as owners Jessica and Ben Schellack for offering us their space for the evening and showcasing the exhibit throughout the winter. Everyone loved the delicious food, too!

The crowd getting to witness “accessibility in action” as local residents and event volunteers help Access Granted writer, Kristen Witucki set up for her reading. The Highland Park Arts Commission would also like to thank project writer, Kristen Witucki for brailling all of the written submissions and creating two anthologies in Braille format. Braille format pieces are so long that two three-inch binders were needed to hold everything. You can find a print binder and a Braille binder at Penstock Coffee Roasters. Highland Park Arts Commission members Allison Baldwin, John Marron (Vice Chair), and Amee Pollack, as well as Councilwoman Stephany Kim-Chohan take a group picture to commemorate the event. Artist Biographies

Allison Baldwin is a poet and disability advocate based in Highland Park, New Jersey. Her work has appeared in print and online, most recently in Intercultural Press and the upcoming anthology Give Me Flowers While I Am Living: Poems, Letters, and Essays Honoring Glenis Redmond. Access Granted is the first of many art/social justice projects she hopes to coordinate in her lifetime. You can follow her on Instagram, @awakening_spells and @notes_on_an_elevator for daily inspiration, writing, and poetry.

Alim Memon is a student at Rutgers University majoring in Information Technology and Informatics, where he is also the off- campus representative for the Student Assembly and a member of the Aeronautics and Astronautics club. He is originally from Pakistan and was diagnosed with Polio at seven months. He can communicate in three languages: Sindhi, Urdu, and English, and his hobbies include hand cycling, swimming, and sled hockey.

Brianna Murray recently moved to New Jersey to work with the EDGE program in New Brunswick. She graduated with a Master’s in Clinical Health Counseling from Winthorp University in 2017 and a bachelor’s in psychology from the same university in 2011. Her guide dogs are the most important things in her life. She enjoys reading, writing, spending time with friends, and is excited to become more involved in New Jersey culture.

Chaz Hayden is a 23-year-old resident of Princeton. He has spinal muscular atrophy, a form of Muscular Dystrophy, and uses a power wheelchair for mobility and living life to the fullest. He graduated in 2015 from the University of Arizona with a bachelor’s in finance and now works full-time at Bloomberg as a Data Analyst and serves as Co-Lead for B-Able, which is an office community that raises awareness for disability inclusion in the workforce. He dreams of becoming an author of young adult novels and is a member of the Society of Children’s Book Writers and Illustrators. You can follow him on Instagram @thechazhayden.

Sophia Sobers is an artist, educator, and photographer. She creates installations and site- specific artwork with a recent focus on soft sculptures and ambient soundscapes.

Kristen Witucki is an author, editor, and teacher who is totally blind. She has written two books for young adults, Outside Myself and The Transcriber. She lives in Highland Park with her three children and husband, James Simmons. Learn more at kristenwitucki.com.

James Simmons was born with retinitis pigmentosa a degenerative eye condition, which meant that he was visually impaired during his early life and became completely blind during his mid-life. While he grew up in an era and community that did not understand his changing vision, he feels that becoming blind gave him an opportunity to reinvent himself. After a successful 22- year career in customer service for a national nonprofit, he continues to work hard raising his three children with wife, Kristen Witucki. James enjoys real phone conversations, and listening to old radio shows and the sounds of nature.

Lorna Hedrick is a 30-year-old single mom to an amazing five- year-old. She was born with retinitis pigmentosa and her quality of life has greatly improved since receiving her guide dog, Yva, particularly when travelling via public transit. She was excited to participate in Access Granted because she truly believes lack of exposure is the reason so many disabled people have issues with the general public.

Javier Robles is a professor at Rutgers University. He is also the president of This Abled, LLC, an organization that provides support to persons with disabilities through empowerment and perseverance. He has vast experience as a community organizer focused on disability rights, issues facing the Latino community, and issues concerning immigration. He has been published in print and online and spoken on television.

Matthew Michael Menechella is a 33-year-old man who enjoys writing poetry. When not writing poetry, he likes to hangout with his friends, play video games, read, and learn new things. He has a deep love for his family and friends. You can find his poetry on AllPoetry.com and can connect with him through Facebook.

Ryan Dunphy is a hospitality management student and freelance photographer working in Middlesex County. His focus has mostly been on landscape, architecture, and nature photography. He has done some portraiture and will be using work from the Access Granted project to increase his portfolio.

Laura Watson is a 29-year-old woman who, at the age of nine months, was diagnosed with spinal muscular atrophy, a genetic neuromuscular disease. She received her bachelor’s in Journalism and Media Studies from Rutgers University where she was an active member of her sorority. She is currently following her passion for fashion with her home-based fashion business. In her spare time, she likes to spend time with family and friends, travel, and go see live theater and music performances. She is particularly passionate about volunteering for the community and disability awareness.

Pandora Scooter is a spoken word and theater artist. Most recently, she won Best Musical for her feminist, punk-rock musical, wRETCH, from the Fresh Fruit Festival, NYC’s largest LGBTQ+ theater festival. She runs a boutique actor training program with Tony Award winner, Cedric Hill and also teaches acting at NYU. She has lived in Highland Park for 27 years and plans to die here. Big thanks to Allison Baldwin for all her work on this great project.

Charles “Pat” McKenna is a New Jersey native currently living in Highland Park with his wife, two sons, and four dogs. He is totally blind, having lost his sight to an autoimmune disorder at age five. He is also a licensed attorney in the state of New Jersey. He has a guide dog named Finn and his interests include fitness, gardening, and horseback riding.

Michael Saverino currently volunteers for the Green Brook Fire Department, where his guide dog Webster helps him carry the clipboard. Michael also helps with therapy sessions and plays sled hockey. With Webster at his side, the world has become limitless.

Yuvonda “Vonni” DeSouza has struggled with anxiety and depression for several years. She walked around in silence due to the shame and stigma until she hit her breaking point and was suicidal for several months. She says it was only the grace of God that saved her. In this project, she discusses various ways of achieving balance through the use of prescription medications and holistic remedies.

Maggie Dominick is a Highland Park resident, where she volunteers for the Arts Commission and the Pride Center of New Jersey. After graduating from Highland Park High School, she earned her Bachelors of Visual Arts from Stockton University. Between her bartending shifts at Top Golf in Edison, she often writes poetry and makes charcoal drawings. Her work is centered around social justice, being the child of same sex parents, and her experiences as a special education student with endometriosis and depression. This project was presented by the Highland Park Arts Commission.

Members of the Arts Commission for the 2019-2020 year are:

Pandora Scooter, Chair

John Marron, Vice Chair

Allison Baldwin

Amee Pollack

Maggie Dominick

Jessica Wu

with Borough Council liaisons

Stephany Kim-Chohan (2019)

Josh Fine (2020)

Special thanks to Mayor Gayle Brill Mittler, Teri Jover, Emma Missey and the borough of Highland Park

Fifteen true stories. Fifteen reclamations of power. The Access Granted project is a two-part photo essay/community writing project centering the lives of those with disabilities living in New Jersey. People with disabilities were paired with photographers and tasked to capture glimpses of their daily lives. The result was a series of powerful photographs and even more powerful stories that place those with disabilities in work environments, family situations, and the mundane every day. In other words, the center of life—where they have always been and where they have always belonged.

This book serves as that reclamation of space, that reclamation of power. Our stories told our way. The way they always should have been.

ISBN: 978-1-09830-557-4