Imagine the World as One: Issue 4 by imaginetheworldasone

Imagine

IWO Magazine

the World as One

Issue 4 | September 2021

An Exclusive Disability Lifestyle Magazine

Paralympian Steve Serio: An exclusive interview

Conservatorships: Do they help or harm?

Finding the perfect accessible RV

PLUS:

The Obi: An accessible eating aid Page 1

Imagine the World as One Issue 4, Fall 2021 EXECUTIVE EDITOR Evan Trad

LAYOUT EDITOR Molly Wiesman

Imagine the World as One (IWO) Magazine seeks to elevate and spotlight the disability experience. We champion and showcase the disability lifestyle by empowering journalists with disabilities to share their extraordinary experiences.

As an internationally recognized disability lifestyle magazine, our focus is on human potential.

Imagine the IWO creates a connection between the readers and our journalists in a meaningful and empowering manner. We inspire those living a disabled lifestyle to dream bigger by providing reallife examples of those who have moved from limited to limitless.

@iwomagazine

@IWOmagazine

@ImagineMagazine2

www.imaginetheworldasone.com

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TABLE OF CONTENTS 4

Steve Serio: On Court and Off Evan Trad

Breaking Barriers Sakina Musta

My Obi Turns Three: A Report Card for a Simple, Powerful Eating Aid John Beer

My Travels Through Life with a Disability Cam Wells Accessible Employment Nethra SIlva

Everything I Needed to Know to Succeed at Work, I Learned from Paralympic Archery Sheri Byrne-Haben

Finding the Perfect RV to Meet My Needs Kathleen Farrey

Britney Spears and Conservatorships: A Form of Protection or a Harmful Denial of Rights? Molly Wiesman

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Build Back Better Better Jobs Act Nicole LeBlanc

Challenge Accepted James Pittman

The Benefits of Pursuing a College Degree Christine Gray

Social Worker to Designer Caron McLuckie

Disability isn’t a Dirty Word Michelle Steiner

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Steve Serio: On Court and Off Evan Trad

Steve Serio’s story is really remarkable. When he was 11 months old, Serio was diagnosed with a benign spinal tumor that he’d had since birth. The tumor became infected and inflamed, crushing his spinal cord. This resulted in paralysis in Serio’s lower extremities. Living with a disability is all Serio knows, and throughout his entire childhood, he worked hard to fit into the ablebodied world. He went to a public school, had nondisabled friends, and played sports with others without disabilities to the best of his ability.

before ever becoming a member of Team USA. “It takes a village to get to this level [of paralympian],” says Serio, and he has had a village of mentors along every step in his journey. His most influential mentor is his father. He would never say no to any crazy idea that Serio had, but he would also never let him quit. He also taught Serio the importance of leadership. This was especially true during one game when Serio was playing in two different Steve Serio, a caucasian male, wearing navy leagues, one with children pants and a white long sleeve t-shirt with a black his age, and one adult Nike logo on it, as well as white shoes, sits in a league. Both had games wheelchair. He holds a basketball against one of the wheels of the chair. A blurred city scape is that day simultaneously, visible in the background. so Serio needed to decide At the age of about 14, Serio discovered wheelchair which game to play. He, of course, chose the fastbasketball. This is where he found a game that paced adult game. His father reminded him of how allowed him to embrace both his disability and the youth team counted on him to lead the team. who he truly was, and it allowed him to surround Serio, upset and frustrated at the moment, forfeited himself with people similar to him, allowing him his opportunity to play with the adults, and instead to stop trying to fit into a world not built for him. played in the youth game that day. Serio began playing on a youth team in Long Island, The Long Island Lightning. Once he embraced the Serio decided to leave New York to attend the sport, he decided to get everything out of it that he University of Illinois-Urbana Champaign and possibly could. In fact, he began to be recruited at become part of the history and legacy of adaptive the University level early. sports in the United States. Wheelchair basketball was started as a sport at the University of Illinois Serio became a leader very early in his life, long Urbana Champaign. With the support of Coach Mike Page 4

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Frogley, who was very well known in the sport, Serio was given the opportunity to leave his legacy in the sport. Frogley taught Serio how to excel as a studentathlete, and also taught him the importance of being a leader in the community. Frogley taught him never to be satisfied and to always push himself because the adaptive sports and paralympic community deserve that level of play. Frogley also taught Serio that the impact that adaptive sports could have on people, especially kids with disabilities, is arguably greater than the impact sports have on the nondisabled community. Through Frogley, Serio began to work on spreading the awareness and the impact these adaptive sports have.

Serio was “.....allowed to yell at to motivate them to improve and get the best out of them….” and who did he needed “.....to put my arm around and provide them with a different type of feedback.”

Another important skill in leadership that Serio learned as he began leading his team is listening, stating that he believes that “you can not be a great leader until you learn how to follow.” While talented at a young age, Serio always respected that he was part of something bigger than just myself. The power of having a great team, coaches, staff, and family behind him every step of the way made it so much easier to compete in each game at a high level. Serio exemplifies how the biggest aspect of being a Serio’s third mentor who had a significant impact great leader is caring more about your goals as part on his journey in becoming a leader was the first of a group rather than the individual goals you can captain Serio played with on Team USA, Paul Schulte, accomplish alone. who, according to Serio, “is kind of like Steph [Curry] before Steph became popular.” Schulte was an iconic Serio’s leadership was tested these past 18 months player in the United States in wheelchair basketball, as the world experienced the COVID-19 pandemic but more importantly, he is an idol to many, including that postponed the Olympics and prevented Serio, because of his leadership. Schulte leads by teams from being able to practice together. Serio example, never plays favorites, and embodies and remembers and shares with his team regularly an embraces everything a Team USA athlete represents. email that he wrote to them in March of 2020 at the Serio was able to be a teammate of Schulte’s for the very beginning of the pandemic, in which he wrote first 6 years of Serio’s career and taught him what it that the teams should “.......stay hungry; it’s the team means to win on and off the court. that uses these few weeks effectively that are going to be on top of the podium, and this situation will Through the lessons his mentors shared and his only last a few weeks, so we need to stay focused on ability to lead wheelchair basketball teams, Serio the goal.” soon found himself leading Team USA. Serio continues to learn about leadership and is constantly finding Little did Serio and his team know that 18 months ways to become a better leader. The most important later, the world would still be in the midst of a thing about being a leader, and something Serio global pandemic, so he and the team had to shift prides himself on, is being a great communicator. gears. They tried to do team zoom workouts and Early in Serio’s career, he was like how one often stay collectively together as a team, but that just pictures the “typical New Yorker”- brash, in your wasn’t going to happen effectively. So Serio decided face, efficient, and had the idea that having these that instead of trying to fight what was happening characteristics is how one wins. It took a while for around them, the team should use that time to take Serio to learn different forms of communication and a step back. “As a Team USA athlete, I am very well how his teammates best communicated, and who equipped to deal with success and failure, but I am Page 5

not well equipped to deal with uncertainty. That is what the entire 2020 year felt like-- uncertain,” Serio shared. For Serio, being in New York City in 2020 during the height of the pandemic was a terrifying time.

These Olympics in Tokyo are about a time of celebration, about perseverance, grit, about what it means to continue to be the best version of yourself in a very, very difficult moment. “As Paralympians, I believe that we are very uniquely suited for the challenge. We live different lives than everyone else every day. We are reminded of our differences, we’re reminded of what we don›t have, but we are provided with a platform to showcase our abilities.” While Tokyo will be a different and unique experience, Serio is even more excited than ever to compete for Team USA, for his country, and in the paralympic games. This is the moment that has taken 5 years to get here. “We as Paralympians will show our strength.”

Yet, this allowed each team member to make sure that their loved ones and themselves were all safe and happy. They knew that they would have time to come together later. During this time away from the game, Serio focused on his mental health, picked up meditation, focused less on the sport’s performance aspect, and focused more on his general wellness. Serio focused on being present and only giving time to the things that he could control, which had helped him up to that point as an athlete, but which he never really had to apply beyond the court in real life. Serio looks back on his pre-pandemic Olympics experience in Rio, where he and his team won their “While we all, as a team, took a step back, we really first gold medal, as an experience that he will never were working on the foundation of ourselves, so forget. Getting to the moment of gold was a journey when we were able to get together for the first time at that held many lessons in leadership. In Serio’s first the start of summer 2021, we hit the ground running. Paralympics in Beijing, the team actually finished Even after a year apart, we were as connected and 4th, which was devastating for Serio. Four years close as if we had never been apart and as we were later, the team won the Bronze medal in London, pre-COVID. This allowed us to really stay together as and that was an important stepping stone because it one unit and one team, which will give us the ability showed that the sacrifices and work that Serio had to accomplish our goals in the coming weeks.” been doing was actually leading somewhere. “The atmosphere at that moment was electric and a game As the team looked ahead to the Paralympics in I will always remember.” Tokyo, they knew that COVID still would present a unique hurdle in the games. “The preparation that When fast forwarding four more years to Rio everyone, as Paralympians, is making and those that when the team won gold, it was not excitement the Olympic athletes made before are unlike anything the moment, Serio says, “Perhaps that is not the anyone has ever experienced,” Serio explained. healthiest way to approach winning a gold medal, While the stands will be empty and the testing and but that was something that I had personally travel will be very different, the spirit of the games worked for over a decade to accomplish - countless is as alive as ever. “The power of being an Olympian teammates, countless shots, and workouts. Finally, or Paralympian is truly about bringing communities to have reached the top of that mountain, all I really together through sport and competition. The impact wanted to do was smile and embrace that moment. that we can have as athletes transcends what we do I have a vivid memory in my head of when the 12 on the field of play.” guys got onto that podium and seeing our flag raised a little higher than everyone else's and having our

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anthem play and just looking down to my left and looking down to my right and knowing that there was not another group of athletes that I wanted to share that specific moment with.” Serio goes on to describe the team, “At that moment, the team was so close and connected in Rio, and even putting aside all of the talents that we had, we just had a great group - from our staff to our players and that's a moment that is gone, but it always will be a shared moment together.”

of not reaching their potential or failing. Serio feels that anyone who wants to try sports should “Just go and do it.” When Serio started playing wheelchair basketball, he didn’t aspire to be a Team USA athlete. In fact, he didn’t even know there was such a thing at the time. Wheelchair basketball was just something he loved to do with kids who looked like him! The essence of sport is about bringing people together, and for Serio, that is what wheelchair basketball did. He loves wheelchair basketball. He loves the people involved with the sport. If Serio were to share advice Serio is definitely looking to add to that memory with someone seeking to get started in the sport, book in Tokyo. That moment was a moment he he would say to them-- “just go for it because the remembers where he felt relief like a weight limits that are put on you in life are only put on you was lifted off his shoulders. The team finally by yourself. The places you can go are truly limitless accomplished the goal that they had set almost a when you believe in yourself.” decade earlier. Even though the team has reached the goal they set out to accomplish, the pressure For more information on Wheelchair Basketball is not off to win again in Tokyo. The hardest thing or Adaptive sports, visit National Wheelchair to do in sports is not to just win, but to win again. Basketball Association Website (https://www. There are many athletes and teams that have had a nwba.org/) for information on the sport or to find singular moment, but the true mark of a champion, a local team. All ages and ability levels are welcome! especially in a team sport, is to win again. Also, consider supporting non-profits like Serio has discussed why the team wants to win again adaptive sports non-profits. The Challenged by observing that the entire team is committed to Athletes Foundation provides adaptive sporting making an impact greater than just winning another equipment to kids with disabilities. (https://www. medal or winning another gold medal. They all want challengedathletes.org/) to further the Paralympic message and increase their platforms to reach the most amount of people possible. Serio shares that one of the ways that they can accomplish that broader impact and leave that lasting impact for the next generation is to continue to be successful on the field of play so that they can accomplish all that they want to accomplish off the field of play. Serio and Team USA are working to spread the message of the Paralympic games and the joy that adaptive sports can bring to people around the world. He encourages anyone interested in playing a sport to “just dive right in,” and to not be afraid

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Breaking Barriers Sakina Mustan richer than anyone around us. As long as we had each other we felt complete and strong.

“You will die,” was my doctor’s prognosis. For me, life has always been a struggle as far back as I can remember. However, with strong family values and strength of character, traits instilled by my parents, I have learned to live gracefully with every curveball that life has thrown my way! My dad came to Bombay, Mumbai, The City of Dreams, from a tiny little village in India. He struggled due to lack of education and was painfully aware of every daunting aspect of survival in a city with cutthroat competition. Despite his own limitations of income and poor health, he managed to send all three of his daughters to private schools and colleges, for which he was eternally

However, dad’s time with us was short-lived - he passed away at the hospital from Muscular Dystrophy at the young age of 47 after being taken off a ventilator. I was only 15 years old at the time. Life became more of a struggle. My older sister started working and I tutored kids at home. We scrambled on and although we did not have much, my mom, being the person that she was, continued our dad’s legacy by always putting others first.

Eventually, both my elder sister and I got married. These happy moments also came Sakina, wearing a cteam colored shirt and with a sense of guilt that our brown pants, sits in her wheelchair. She is little sister, being single, was pictured on a sidewalk against the backdrop now left alone to fend for both of a purple sky and buildings behind her.

grateful. Education was very important to him as it was hard for him to read and write on his own.

herself and my mom, which she did bravely.

A couple of years into my marriage, my husband and Although we did not have much, our parents taught I decided to migrate to Canada with our two kids, us the importance of humility and compassion, not a son and a daughter. My husband went to Canada by preaching, but by living it. Extended family often before I did, and I joined him later with the kids to came from the village for treatments that were only what I thought was a new chapter in my life. Little available in the big city for illnesses such as cancer. did I know what awaited me! My parents welcomed them with open arms making sure they had everything they needed, even if we With dreams of a fresh start at age 27, I landed had to go without some things. When my aunt, my in Toronto with my kids. Within a few days of my dad’s sister, passed away, dad took her daughters arrival, I slid into a coma due to respiratory failure under his care. Sometimes he bought groceries for and woke up in the ICU, breathing on a ventilator. relatives in need before he got them for his own Soon living as a wheelchair user, my life as I had family. It was deeds such as this that made us feel known drifted into oblivion.

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While I was in a coma, the doctors asked my husband to make funeral preparations for me, unaware of my genetic history of muscular dystrophy. At about the same time my elder sister, who was residing with my mom and little sister in Bombay, had been diagnosed with muscular dystrophy too. It was a double whammy for our family, but we were survivors, so we strode in this storm like warriors!

Although my life had taken a 180-degree turn, in a new country with no friends or family, I took things one day at a time. Now as a mother with children, it was certainly not easy to tend to toddlers who were more dependent on me because they were less familiar with their dad, but somehow, they became the very reason for my survival. I mustered courage so that I would be able to teach them and impart my values to them, something I felt only a mother could do.

I must have done something right as they became recipients of the Toronto Police and Paramedic’s Bravery award (both being under 10 years of age) for calling 911 right on time, after I passed out due to my ventilator being unplugged! They then bravely answered every possible question that was asked of them. The Toronto Star covered this act of bravery, and I could not agree more with their caption of the story, “Mom gave life, kids give her life back!”

In retrospect, I believe losing my mother (although heartbreaking at that point) was better as she did not have to see my world crumbling around me. At the darkest hour in my life, my marriage ended. Some relationships can’t weather storms...illness, adversity, financial strains, and one roller coaster after the other, broke something that every girl believes will last forever.

I have no regrets though. Life has taught me that the only thing constant in life is change. Two decades after I first landed in Toronto at the age of 47, I feel grateful to be here, and for my kids, my two angels to whom I owe my life and every happiness that I have ever felt. Today, with my children being young adults, I could not have asked for more devoted or loving kids, although our lives are far from perfect. We are three adults facing constant battles with caregiver issues, filling in gaps of care, getting my wheelchair repaired, or sending e-mails to get funding for equipment or upgrades with ceiling lifts, and ventilator batteries. Ultimately, due to the constant progression of my disability and deteriorating muscles, now I am a functional quadriplegic, unable to drive my wheelchair on my own. I have difficulty chewing and swallowing and anxiety attacks (mostly over the future), not knowing what’s next. I am so grateful to God and my children for all the efforts to keep me close and at home. The love in our hearts runs like a twine that keeps us together. In them, I see my parent’s kindness running through the generations of our family. My resilient young children and my little sister (who has been my rock) remind me every day that even though we may not have as many things that make life comfortable, the strong bond of love that empowers us will always keep us sheltered from any storms that lie ahead of us.

When I felt that life was finally falling into place, it was the calm before a storm! Once again, I was given a second chance at life, but sadly, my older sister’s life had ended at 32, battling her weak lungs that could not breathe despite ventilation. Her voice still echoes in my ears, begging me “please bring me to Canada,” so that she could receive better medical treatments and care too! I was so downtrodden with my condition, weakness, and financial situation, that in those moments I did not have the stamina to provide consolation to a sister who had always stood by me. I have outlived the life expectancy predicted by the doctors and longer than every member of my I had not yet recovered from losing my sister when family who has received a diagnosis of muscular I lost my mother, a being whose prayers always dystrophy. I hope that I continue to live to make my gave me so much solace and made me feel I could parents proud. I also intend to write a book about overcome every difficulty. That period of my life was my journey and share my story as an example of a total abyss. resilience for other people to follow. I hope that I can Page 9

be like a candle that brings light in people’s darkness and let the world know that eventually everything falls into place. Until then, my advice is to laugh at the confusion, live for the moment, and know that everything happens for a reason!

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My Obi Turns Three: A Report Card for a Simple, Powerful Eating Aid John Beer November is my wife’s birthday. We’ll probably make her favorite dinner, light us some candles, set the music right. Then she’s going to set me up with Obi, and leave us alone together. It’s this arrangement we’ve got. Obi’s a cute little unit, too, and treats me like I’m the only man in the world, even feeds me from its dish – yeah, “its,” because Obi is my eating device. (What’s going on in your mind?)

The Obi

(https://meetobi.com) is a robotic eating aid, and besides my wheelchair and van, the best thing I own. It’s true that robots will one day be our overlords, but they have to take baby steps first, like spoon feed me. So we need each other. It’s a long game Obi and I are playing, but I go along

and this is its report card. He’s been a very good boy.

The Obi is a simple yet savvy way to help people with disabilities to be themselves. That sounds cheesy, but eating is important, after all: you’ve gotta do it a few times a day. So it’s nice to be able to choose what and when you eat, or if you want to cut a break to your caregiver and yourself by eating independently, suddenly these choices are yours again.

Obi’s design is beautiful, not only non-institutional and pleasing to the eye (a young friend noticed Obi looks like Luxo Jr., the hopping lamp mascot at the beginnings of Pixar movies), but so easy to use. Here is a sophisticated machine that requires no time at all to learn and

John wears a bluish gray shirt as he sits in his wheelchair with hji OBI, a white device with his food compartmentalized in it with an arm that holds a spoon on a table in front of him. There is also a red cup with a yellow straw in it on the table in front of him. with it, because if you put good enough food in my operate. It is a robotic arm with a spoon attached, mouth, I’m down with just about anything. You can mounted on a small platform (17” x 12” x 3”, and call me Eggs Benedict Arnold. only 7.5 pounds) with a plastic tray overlay moulded with four bowls, and a pair of touch sensors for you. I’m not a products and brands guy, but this is one That’s it. I’m going to promote. The Obi is an important tool I want the disability community to know about. It The sensors can be buttons, touchpads or any other is well-designed and well-supported, and it fosters switch needed. These can be placed on the table, a basic but vital act: independent eating. Soon we’ll in your lap, under your feet, wherever. One button celebrate my Obi’s birthday as well, three years old, moves the spoon from bowl to bowl, and the other

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tells it to scoop and feed. The robot even pushes food down to the middle of the bowl, and scrapes the spoon along the edge of the bowl to minimize dripping.

There are so many benefits here

Without the Obi: Diner and caregiver in each other’s faces, bringing any moods from the day along with them. The last barnburner argument between my wife and me happened when she was feeding me. There’s just all kinds of opportunities for miscommunication in this simple transaction. With the Obi: Blessed time apart, breathing space.

Without the Obi: Eating is a dependency relationship, even if a well-meaning one. With the Obi: You feed yourself.

which we set on my lap, bobby-pinned to a square of egg crate foam that won’t skate away from me. My wife fills the bowls, presses a Set button and then holds down a Memory button while she positions the spoon at its target, i.e., my big mouth. All done, and she’s off for some sweet solitude.

It’s the utter simplicity of this machine that’s still a wonder to us. No phonebook-sized manuals, only charge it and go. How can there be no manual? I’m picturing my father on Christmas mornings, performing some assembly required’ on go-karts and play kitchens, with my mother perched over his shoulder saying Nevermore, as he transformed from kindly Santa to cussing Homer Simpson before our eyes. Now, here’s this elegant Obi, that does so much more and is so much more important, and it’s A close up of John’s lap, where the arm of his wheel- (sigh) easy. chair with controls on it as well as the OBI, and the control board for the Obi are visible. The Obi handles most

Without the Obi: Eating is sometimes rushed, with two separate minds at foods, although you have to experiment because work, bringing the risk of choking or aspirating food. some dishes work better in the spoon than others. (I’ve posted on WheelieOutThere.blogspot.com With the Obi: Eating at one’s leisure, daydreaming a nitty-gritty of foods and workarounds for Obi.) or watching TV, or hey, burping without having to Some meals go perfectly, while others you end up excuse yourself. wearing on your sleeve quite literally. You have to wear a dinner napkin just in case, but you’re doing I’ve had MS so long I’ve got barnacles and am pretty that already, aren’t you? A couple of dropped bits much down to one arm with no finger movement. on your lap napkin is nothing for what you get here. My interface with Obi is a pair of touchpads to swipe, This Obi gets the job done.

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After three years, the thing still works like it came out of the box. Only once, three months in, the spoon somehow got hung up while digging in bowl number two, snapping off a plastic piece where the spoon mounted to the arm. I remember being slightly chuffed about the support available on the bare-bones website, and wrote to the email address provided.

That was also the day I met the late David Hare, who passed away from ALS in 2017. Without use of his arms, David controlled the Obi with his feet. He showed me around the device, and assured me that if I went ahead with the purchase, I would not regret it. I didn’t purchase the Obi until many months later, but you were right, David. Thanks, man.

Obi shows no talent for making wishes or blowing The director of customer service was traveling at out candles, even if only three. But coincidentally, the time, but responded in no-time-flat. A couple of its choice of birthday cake just so happens to be my days later, I received not one replacement spoon but favorite, a double-chocolate cake so rich and dense several, with simple printed instructions for making that it threatens to tip over the machine, spoon-first. an easy but necessary adjustment. To be sure all Happy birthday to me. went well, customer service set up a phone call with their tech vice president who helped develop the Find Obi on Facebook or at meetObi.com device. The design flaw never reappeared and it’s been smooth eating ever since. In that time I’ve used John Beer blogs at WheelieOutThere.blogspot.com the Obi once or twice a day, with some days skipped, and Instagram @wheelieoutthere so I’m guessing 750-1100 meals.

The Obi costs real money - $5,950. I’ve not yet found the case where Medicare covers it, but Medicaid has covered at least one unit, in Missoula, Montana. Obi has just been listed with a federal GSA contract, to help get it to veterans. The manufacturer, Desin LLC, offers rental and lease-to-buy options, as well as other funding alternatives. My hope is that the more popular this quality device becomes, the more likely it gets picked up by Medicare, and my hope is that once Medicare covers it, everybody will. In the meantime, putting out that kind of money for a relatively recent device is scary: it was for me. That is why I wrote this review, to say that I took the step and found it worthwhile. I should clarify that I have no connections to the company, other than as a happy customer. I first saw the Obi at the 2016 Chicago Abilities Expo.

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Finding the Perfect R

Kathleen

I am a 60-year-old female little person/person of Massachusetts and so short stature (aka diastrophic dysplasia dwarf) who much more! became paralyzed from the waist down in 2016 after a surgery gone wrong.

Then,

raised in a small community by two loving parents.

turned upside down.

Prior to 2016, I lived a “normal” average life. I was My parents repeatedly told me I was as good as

sadly,

after

surgery gone wrong in

2016, my world was

Life for me came to

anyone else, and I was encouraged to try and do a screeching halt. At anything I wanted. As a little girl I loved our family age

55,

suddenly

vacations. With a pool in our backyard, celebrating

found myself feeling

childhood anyone could dream of.

“handicapped” and “disabled.”

community high school, I went on to enjoy a

I take care of myself? Can I take care of myself?

holidays and summer BBQs with my extended isolated, alone, and for An RV is seen driving down a road a and a sunset. Image credit: edb3_16 family (31 first cousins to be exact), I had the best the first time in my life After attending and graduating from our local

successful 30-year career with a well-known

national non-profit, buying my own home, driving myself to and from work every day, paying taxes, doing everything right, enjoying life, never feeling “handicapped” or “disabled.”

In 2005 I met the man of my dreams, my soul mate.

Now what, how do I go on? How do I live? How do

So many questions consumed me for days, weeks, months, years and sometimes still to this day.

The time came when my fiancé had to return to work,

and we needed to find someone to help me during the day. My fiancé commuted into the city via a onehour train ride Monday through Friday, leaving at

Together we enjoyed traveling and experiencing about 7:15 am and not returning home until about various adventures such as snorkeling in St. Thomas

6:45 pm. Being alone 11.5 hours a day and unable

USVI, parasailing in the Caribbean, walking hand- to get to the bathroom on my own was out of the in-hand on Waikiki Beach in Hawaii, snowmobiling in

Vermont,

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whale

watching

excursions

question. Being able to use the bathroom was by

far my biggest need, along with getting me a cup

IWO Magazine

RV to Meet My Needs

n Farrey

of coffee, getting me a made it very easy and convenient for her to come tissue when I sneezed, and go easily, leaving me “alone time” which I preparing my lunch,

discovered I desperately needed to maintain some

be able to mentally

word “helped” me, because she was NOT a CNA, she

etc. At this same time, I knew I would not

accept a total stranger (aka an aide) sitting in

“normalcy.” She was my neighbor that became my

friend that “helped” me during the day. Notice the never made me feel like a “patient” or “her job” to

“take care of me” and for me, that’s what I needed

my living room for 11 for both my mental health and physical needs. hours every day - and I was not receiving any

Then came March 2020, the COVID-19 pandemic.

against the backdrop of mountains financial assistance, While the pandemic in itself was and still is terrible, 6 so this was an out-of- along with most of the country, my fiancé started pocket expense we would have to pay. working remotely and continues to do so now. For us, Initially we hired Certified Nurse’s Aides (CNAs) to help me during the day, but at a minimum of $25.00/hour to have a stranger sit in my house and

eat all day, or sleep because they worked all night at a nursing home, did a great deal of damage to my

mental wellbeing. After about 7 months and 4 CNAs, I was extremely depressed. This is about the time when I realized how painfully different I really am.

Purely by accident and by the grace of God, I

accidently came across a woman who lived in my condo complex who was looking for part time work.

She was a gift from God in so many ways. Not only was she NOT a CNA, but living in the same complex

this was a huge benefit, financially and emotionally. I no longer felt like a “patient.” I felt free, I felt normal!

After months of lock down, people were not happy

about not being able to go out to dinner with friends, not being able to go to the beach, not being able to be out ‘n about whenever they wanted, but it occurred

to me that I hadn’t been able to do any of that for the last 4 years. Pre-COVID vs. post COVID, not much really changed in my world.

While I am technically considered a paraplegic on paper, with the paralysis being from my waist down,

in some regard I could be considered a quadriplegic, because as a person of short stature, my arms are

Page 15

not as long as the average height person. Therefore,

paralyzed little people which is why there is nothing

paraplegic person can most likely reach elevator

number of people.

I’m not able to reach what the average height person in a wheelchair can reach. An average height

buttons, but I cannot. An average height paraplegic

available for me - it is not financially beneficial for

manufacturers to make items for such a limited

person can most likely lean forward enough to push One of the issues that has forced me to become themselves in a manual wheelchair, but I cannot.

a prisoner in my home is my inability to use the

the car, but I cannot. An average height paraplegic

(male) to actually lift me from my wheelchair to the

toilet, but I cannot.

between. As a result, I have become a prisoner in my

An average height paraplegic person can very often restroom on my own when I am out in public. Using

transfer themselves into a car AND get their chair in my restroom is impossible because I need my fiancé person can most likely transfer themselves from toilet. My fiancé can’t go in the lady’s room; I can’t go their wheelchair to a sofa or bed or the all-important

Because my limbs are shorter, I have discovered there are literally NO assisted living devices that

will help me be somewhat independent. Several

in the men’s room; family restrooms are far and few own home.

My fiancé and I thought that perhaps a small RV or travel trailer would be best. We visited Campers

occupational therapists have been to my house to World in Kingston NY several months back and while supposedly “teach me” how to transfer myself from the staff was polite, friendly and understanding of

my wheelchair to the bed or sofa or even toilet our situation, no one knew where we might be able but guess what - they ALL leave saying the same

to have a wheelchair lift installed. We have searched

on to any kind of slide board. I can’t even open the

starting at around $200K, and too big. Mostly Class

thing, “sorry we cannot help.” My arms are not long

around and while there are factory built accessible

enough for me to push down and lift/slide myself RVs currently on the market, they are too expensive, refrigerator door because in order for me to be able to reach the handle, I have to be literally right next

to it, then the refrigerator door won’t open because my wheelchair is in the way! These are just a couple of the 2 million things that average height people in wheelchairs don’t know anything about.

My surgeon had the audacity to say to me that people

in wheelchairs “go on and live very productive lives.”

As are factory built accessible, with no smaller Class B or C meeting our needs.

Then suddenly, after dialing a wrong number, I

found an amazing company and two amazing men not only able to help us find an accessible Class B but

eager and anxious to do so! Elite Van Conversions

is a leader in designing and building customized personal use luxury sprinter vans, commercial use

How does one do that when they can’t reach beyond vans and toy haulers. We are excited to be working

5-6” in front of them! I have had doctors, specialists with Bob and Steve as together we design and and lawyers all tell me they are aware of MAYBE 5 build the RV we hope to use when we return to

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IWO Magazine

traveling, exploring new places and living our best You can visit Kathleen’’s website at

life together. Designing and building a custom RV is https://livingthislittleparalyzedlife.com/ pricey, but we hope to do a fundraiser and maybe get a few donations. Bob and Steve have had several

phone conversations with us to discuss all the various options and the cost of each option, and they have taken the extra time to listen and understand

our needs and to research what would work best for our customized RV. Saying THANK YOU just does not seem enough!

The financial drain of Living This Little Paralyzed

Life is daunting to say the least. This drain is felt when attempting to convert our home to a smart

home to enable me to use voice commands to turn

on/off lights and installing automatic door openers that allow me to open the front door when the

doorbell rings. Financial concerns are also relevant

when considering the need to purchase an accessible vehicle with ramp (in my case, a used Dodge Caravan at $50K), not to mention all the personal hygiene items I now need on a daily basis, etc.

My hope is that more people will understand that

not all disabilities, disorders, or syndromes are

the same. Just because a “handicapped accessible” sign is on the door of a restroom does not mean every disabled person can use the restroom as is,

just because elevator buttons are lower does not

mean everyone can reach, just because you hear of electrical bikes does not mean everyone can actually

reach the pedals to use them, just because new exoskeleton suits are available does not mean there

is a size to fit smaller people, etc. More resources need to be made available to help little people and/ or any person with unique situations.

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Britney Spears and Conservatorships: A Form or Protection, or a Harmful Denial of Rights? Molly Wiesman In a recent court hearing attempting to get her father arrangement to ensure her best interests, or was it removed from his role as her conservator, or what is cause for a suffocating loss of autonomy that has had also known as a guardian, Britney Spears compared detrimental consequences on her life? the constraints she has been living under the control that sex traffickers have over their victims. She Spears was placed in the conservatorship by the testified that possessions such as her credit card, court in 2008 after a very public struggle with cash, phone and passport were taken away from mental health that resulted in her being hospitalized her, and claimed that as and placed under what a result of never being is known as a 5150 hold, given privacy. Those who allowing a person to be were living and working hospitalized without their with her had the liberty to consent, after Spears watch her change and see locked herself and her her naked body. She also two sons in a bathroom claims she never had input in her house when her into her work schedule ex-husband came to and was threatened pick up the boys for with not being allowed visitation. In recent years, to see her children and Spears’ efforts to get out boyfriend unless she of the conservatorship met three times a week have shed a light on the with her therapist and important issues of the psychiatrist. Limitations sometimes necessary, but like the ones placed on often confining, impact Spears by the type of of conservatorships on Britney Spears’ star on the Hollywood Walk of conservatorship she is in the lives of people with Fame. Photo credit: travelview are what so much of the disabilities. public outcry over the case has been about. Rights Jenny Hatch, a young women with down syndrome, a person might not have under conservatorship was forced into a conservatorship after her mother may include the loss of the ability to make decisions was injured in a bike accident and was left unable about where they work, get mental health treatment, to care for her. Hatch successfully battled to get out and their ability to determine who they associate of her conservatorship. This spurred the creation with as well as the loss of the right to vote. The of the Jenny Hatch Justice Project, which provides question that has arisen in the Britney Spears case support to people with disabilities and those who is if Spears’ conservatorship is truly a necessary play key roles in their lives, giving the tools they

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IWO Magazine

need to protect and promote their rights to make mental health challenges. Whitlatch observes that their own choices about how they want to lead their it’s unknown how many people with disabilities are lives. under conservatorships, but estimates there might be as many as 1.3 million. However, it is known there Morgan Whitlatch is the director of the Jenny are three times as many people in conservatorships Hatch Justice Project . The type of disabilities that currently than there were in 1995. people in conservatorships have varies greatly, and Whitlatch believes that it is important to There are three types of conservatorships - limited, point out the distinction needs to be made that temporary, and full. With a limited conservatorship, conservatorship not only impacts the elderly or conservators only have certain powers that are people who have developmental disabilities, but determined by the abilities of the person under the that people with all kinds of disabilities are placed conservatorship. A temporary conservatorship is under conservatorships, which are not specific to implemented only for a time limited period. With one kind of disability, or even one kind of group of a full conservatorship, like the one Spears has, the people. Whitlatch observes that a conservatorship conservator is given complete control over the “….impacts a broad swatch of people and has the finances of the person in the conservatorship and all potential to impact all of us as we age.” One common parts of their estates. instance where the need for conservatorship may be seen as necessary is when adults with disabilities Whitlatch explains that courts have a tendency to age out of the special education system at the age of resort to generalized conservatorships as opposed 22 and the rights parents had over them come to an to limited ones. “In some states, they’re supposed end, although the parents still may find it necessary to be encouraging tailored guardianships….only to, as Whitlatch puts it, “act in the role they acted in limited to the areas where people can’t make before.” decisions for themselves, and there’s not a less restrictive option that could be used instead of court The down sides of conservatorships, like the ones intervention.” Some conservatorships only cover that have come to light with Spears’ testimony specific areas like finances and medical decisions, in her case, have the potential to arise when the but general conservatorships, like the one Spears person placed in the conservatorship is not asked to has, are far more common. Some states have limits be involved in decisions involving them. Whitlatch on what a conservator can do without going back makes the observation that although best practices to court to get special permission. Instances of this for conservatorship indicate that the conservator include when a conservator wants to force someone should involve the person in decision making, this to have an abortion or undergo electroshock doesn’t always happen because the conservator is treatments. In some instances, under the power of the one that has the final say. some conservatorships, people have been forced to live in group homes or work in sheltered workshops Conservatorships have many specific potential against their will, denied the right to marry, pushed pitfalls, including that they aren’t time limited, into forced sterilizations, and have been denied and the person under them often does not know access to their own money, their ID, their phone or what their legal rights are in relationship to a computer. their conservatorship. It is not only people with intellectual disabilities who may find themselves Many disability advocates champion the idea under conservatorships, but also people with serious of supportive decision making for people with

Page 19

disabilities as an alternative to conservatorship, allowing a person to be able to make their own decisions with the support of people of their choice who they trust. Supportive decision making allows someone to gather input from the support network around them in order to come to a decision, as opposed to a conservator being able to have so much influence and control of the circumstances surrounding the person. Whitlatch makes the distinction between supportive decision making and conservatorship, saying that, “In supportive decision making, you’re getting advice and help from other people but you’re the decision maker nobody else is making the decision. You’re the one signing on the dotted line.”

to be made that highlight positive alternatives to conservatorships that place less restrictions on people who may need the kind of structured support system that the conservatorship intends to provide.

On August 12, Jamie Spears said that he would eventually step down as Britney Spears’ conservator “when the time is right,” and that a new conservator would be appointed, indicating that his willingness to step down does not mean the end of the conservatorship all together. It remains to be seen what impact Spears’ conservatorship case will have on the future of conservatorships for people with disabilities who rarely have the privileges and status that Spears has. But one hopes that her case shines a light on the numerous other examples Whitlatch emphasizes the benefits of alternatives of people placed in conservatorships that may be to conservatorships such as implementing powers unnecessary or have overreaching constraints , and of attorney or supportive decision making, along that legislative changes will be made to prevent the with financial arrangements that don’t involve the sometimes oppressive restraints of conservatorship removal of rights. She also observes that in certain from happening in the future. cases, the implementation of a conservatorship may be necessary, but advises that when it is, it should be time limited and tailored. Whitlatch points out the danger in viewing the Britney Spears case as an outlier in a sea of an unknown number of people who may be living under conservatorships needlessly, and that there is the potential for harm when Britney’s case is differentiated from that of others in conservatorships because of her celebrity status. “She’s not alone,” Whitlatch points out, adding that “There are people who have been in similar circumstances without her kind of financial resources who haven’t been able to control their own bodies or their reproductive rights who haven’t been able to marry, who haven’t been able to gain access to their own money, who haven’t been able to travel, who haven’t been able to associate with certain people, who haven’t be able to vote.” Whitlatch hopes that Britney’s case highlights the potential harms of unnecessary conservatorships, and that her case causes reforms

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IWO Magazine

Build Back Better Better Jobs Act Nicole LeBlanc

As America moves towards pandemic recovery and so forth. In addition, when people like me live in it is essential now more than ever that we make the community we often live longer and have better massive investments in expanding access to health, life outcomes. The COVID19 pandemic proves home-community based services (HCBS) for kids this when we look at COVID19 risk in segregated and adults with autism and other developmental disabilities regardless of

IQ,

whether

they are at risk of

settings, those who self-direct their services who may have lower risk of the virus. What

institutionalization. No

one,

the

cracks.

with

regardless

fall

Act

People

mental

for

(HAA),

bill

that adds Home and Community

have more adaptive and

need

of the HCBS Access

through

with higher IQs often functioning

the

assist

HCBS is the passage

of disability severity, should

would

Based

Services (HCBS) as a

deficits

mandatory

health

Medicaid

challenges like anxiety A nurse wearing maroon scrubs and a white sweater service. Passage of assists a caucasian woman sittjng on a bed by helping her this bill would allow and so forth. raise her arm above her head. The woman being assisted wears a white shirt with black embroidery around the for Medicaid to be a service, Our service system neck. as well as a mask and a neck brace The walls of the mandatory room sare white and therre is a white bookshelf with a enabling people with must be reformed into pink lamp in the backgorund. Photo credit: aquaArts disabilities to more a proactive system studio easily be able to that enables people with disabilities and their families to get access to receive in-home care, and live in the community as HCBS without being put on waitlists for decades or

opposed to nursing homes.

settings like day programs, group homes, institutions,

from a system-centered model to a truly person-

needing to be in crisis to get services. Community

living has been shown to be safer than segregated

As we reform our system, it is essential that we move Page 21

centered system that supports self-determination, as a professional disability rights advocate when it self-direction, and individualized support in the

comes to various work tasks like drafting meeting

community. In order to make this h a p p e n , w e agendas, dealing with computer malfunctions, and m u s t invest in affordable accessible housing,

editing written briefs on challenging topics like

public transit, and a highly trained Direct Support doctor house call interviews and so forth. Workforce that is paid livable wages, decent benefits like paid sick days, leave, vacation days, tuition

When I lived in Vermont and got HCBS services I

effective job coaching, self-determination, self-

self-direction and resources available to support

reimbursement, and so forth, long with access to self-directed my waiver and found self-direction paid training on a variety of topics like autism,

advocacy, health disparities, health promotion and much more.

Being paid a livable wage is a human right. A nation

is judged by how a society treats its most vulnerable.

A long-term care expansion is essential given that

to be very empowering. It is vital that we expand

people who self-direct their services by hiring and retaining high quality job coaches and support staff

that are critical in keeping my anxiety and stress

to a minimum. Self-Direction is one of the safest

models in the era of COVID19. I call on all members of congress to pass this bill with 400 billion in HCBS

COVID19 is going to lead to more people becoming unanimously. If we all live long enough, we will all disabled due to long COVID. Disability is a natural

part of the human experience, and we must plan for a society that can accommodate the challenges that come with being disabled.

Expanding access to HCBS and allowing us to buy into it and get access to HCBS via a Medicaid

state plan would make my life easier. As a person with autism, anxiety, ADHD, and insomnia, having access to HCBS would make my life easier in that

it would allow me to get support with things like cleaning, budgeting, organizing, technology, dealing with life transitions, stress management,

medical management, managing public benefits,

and resolving tax issues, in addition to things like facilitating meetings, organizing files, preparing and creating presentations, editing, writing things in

plain English, and managing deadlines to name a few. In the area of employment support expanding HCBS

for all adults with autism would allow people like

me to get job coaching that is critical to my success

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join the “Disability Club.”

IWO Magazine

Disability isn’t a Dirty Word Michelle Steiner The word disability is not a term that some people are comfortable using. The term implies more of what a person can’t do, rather than what they can. In attempts to not offend a person with a disability, people often take the extreme of using terms such as “handicapable,” or “special” to describe a person with a disability. How a person with a disability describes their disability is a personal preference. Some people with disabilities may feel comfortable using the term disability, while others may prefer another term. The problems begin when people without disabilities begin using euphemisms to describe a disability in attempts to categorize a disability, creating ableism. Ableism is a discrimination of people with disabilities, preferring people who aren’t disabled. When people neglect to use the term “disability” unless otherwise noted it is a person’s individual preference, it widens the gap between people with and without disabilities. Many people don’t understand that when you get labeled with a disability, it can often be messy and confusing. A diagnosis may give answers and strategies to help, but it can also lead to more unanswered questions. Often what looks like what will work on paper doesn’t turn out that way in real life. I have had people try to plan my life based on my disability diagnosis. People would tell me that because of my math abilities I could not handle college. I was pushed to go to vocational school even though nothing interested me. When I decided to go to college, despite having a disability, people told me I wouldn’t go beyond community college and my job choices would be limited.

I have also had people try to decide who I was going to have a relationship with based on my disability status. I can remember a guy encouraging me to pursue a relationship with someone solely because he had a disability as well. He said that I should date him because “God put us on equal footing with having a disability.” The man was considerably older and had a different disability. He liked me and was a nice guy, but I didn’t share those feelings for him. I have also experienced other situations where people have said that I should be with a person who had a disability. None of these relationships with another person with a disability have worked. A disability is only one part of who the person is, not the whole individual. I wasn’t looking to marry a disability, but a person who I wanted to share my life with. I have known couples where one person had a disability, and the other person did not have one. I have also known couples where both people had disabilities. It’s also important for the partner to be accepting of the other partner's disability. I have had people who said they wouldn’t date me because they couldn’t handle my disability. I also remember a supervisor telling me that I may not find someone because of my disability. She was right that some people did not want a partner with a disability. I had a guy who broke up with me saying that I could drive if I really wanted to and was tired of taking me places. I also had a guy who told me that he didn’t think he could handle my disability. I was lucky to find someone who loved me and was supportive of my disability. Many people have an image in their head of what

Page 23

constitutes a person with a disability. People either think that a person with a disability can’t do anything or that they have superpowers to accomplish anything. Neither extreme defines what having a disability is truly like. A person with a disability has things that they are good at and things that they struggle with. Many people question whether I have a disability because they can’t see it. The picture of a disability that comes to mind is a person with a physical disability that uses adaptive equipment such as a cane or wheelchair.

describe my disabilities only in positive terms. If I shared how I was struggling in a class, people told me that I was too negative or that I shouldn’t feel that way. I also had people tell me that my disability wasn’t so bad or compare my disability to another person’s disability. How I view my disability is an evolving process. I don’t view having a learning disability the same way as I did when I was first diagnosed.

The term disability isn’t a foul word or a shameful secret that someone has to hide. Each person with People with disabilities should be encouraged a disability needs to have the freedom to have to use the language they want to describe their their own narrative about their disability. Each disability. Some individuals with disabilities may person with a disability will experience a disability feel comfortable sharing what their disability is, differently. We can’t control how another person will and others may not give many details. It is also react when we share our disability status - through important for a person with a disability to be able to sharing our unique stories of having a disability, it speak about their feelings about having a disability will break the stigma and show that disability isn’t without judgment. I have felt the pressure to always a dirty word.

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IWO Magazine

My Travels Through Life with a Disability Cam Wells My interest in disability issues did not begin the day I received my journalism diploma, or even the day I covered my first accessibility story. The fact is it began with a small boy having lunch in the fourth grade. September 29, 1995 was a warm sunny Friday out in Essex. Just another day except for the headache I could not explain.

school known then as Children’s Rehab (today the John McGivney Children’s Centre) and found my class time interspersed between sessions of physical and occupational therapy. Day by day, my condition improved - and I began making friends.

Then it happened. In a routine follow-up appointment, they found part of the AVM was still I was more or less your typical kid. My only in. Despite the protests of a Canadian doctor who concept of what a disability was came from seeing recommended a potentially deadly alternative, a classmate in a wheelchair. The lesson of that day I became the first child Harper Hospital ever for me was even what you don’t know can radically performed Gamma Knife surgery on. shape your destiny. Finally, 11:40 a.m. struck and I couldn’t take the pain anymore. I lurched my way Eight months later, I was told I was strong enough to over to the classroom carpet and the seizures began return to my prior school, Maplewood. I was shocked shortly after I fell. I didn’t know what was happening, to see the way I was regarded. I had to go for follow but it wasn’t long before it no longer mattered. up MRIs, and Maplewood’s staff and students began I lost consciousness. I was taken for emergency an effort to make it a little easier. There was no MRI brain surgery to try to remove the arteriovenous in Windsor then so they, in partnership with another malformation (AVM) in my brain. local school, worked to raise funds to build one. I spent the next year there feeling mostly accepted and understood. The next leg of my journey was not an easy one, but it taught me that one can learn a very great deal in pain. I was transferred to another school closer to my home, where, as an 11-yearold child, I was subjected to the ridicule and pain that go with having a disability in a place where authority figures don’t explain to children that having a disability does not rob one of their right to dignity. My childhood bullies were ignorant at The next 29 days were spent in the hospital, where best. I recall they would try to stick magnets to my I began recovering some functionality of my limbs. leg to determine if my limp came from a prosthetic. It was not until I arrived back home that things I did all I could to survive day by day. Years later, really improved. That night sitting on my couch my this humiliation would be the catalyst for a need to leg started to move. It was a start, but life was far speak out about equality. from what I had known. I was about to find myself among strangers who would forever change how I In high school the realm of dating was one where my thought about strength. I was enrolled in a rehab disability was an all-purpose excuse to “not aim too Dr. Anita North and a team of specialists at a hospital named Hotel Dieu were partially successful in removing it, and after 6 days in a medically induced coma, I was seemingly out of danger. I awoke to find myself paralyzed on the left side. My mother attempted to explain what had happened, but I held up my still functional right hand to stop her and proceeded to quote a commercial we both liked, saying, “It’s okay. I’m still me.”

Page 25

high” as I was so often told. I met a mentor my first day in high school. This man was assigned to me as a Child and Youth Worker, but he understood this to be more than a job. He taught me about the courage and dignity that was within me, and ultimately, when he and his wife opened a childcare facility, he offered me a position. In these years, I also met some amazing people who encouraged me by faith. Joining the school’s Christian Fellowship gave me something positive to focus on. All things considered I was starting to find myself or so I thought. Graduation day closes one door and is supposed to open new ones. That is, if you choose wisely. I made a monumental mistake, but as you’ll hopefully understand, perhaps the most necessary one I ever made.

through those hardships I came to understand that there is no shame in seeking accommodation or guidance as needed. Assuming I knew everything I needed to without any guidance all had been my biggest pitfall once. Doing something more technical and design oriented proved the right move.

One day an academic advisor called me up and told me had recommended me for a bursary award because of how much I had improved academically. I received the award for my improved grades and on that night I first became aware of the Italian Canadian Handicapable Association, a disability group that offered this bursary to students with disabilities. Imagine me, the same man who less than one year earlier had been told he was an academic disgrace receiving recognition for outstanding a c a d e m i c performance.

I thought because I worked in a daycare this was the path of In that moment, the my life. My motivation very professor who for working in the had underestimated day was simple - live my worth as a student as an example so because of my these children would condition watched as see someone with a I accepted the award, An hanging electric sign that spells out the words “On disability and grow up My confidence was Air.” Image credit: Derick Hudson without the prejudice starting to be reborn, I had known. In doing a placement once, I was asked and with it came a fascination. My news stories for to write about myself and I was told I had to change class became more focused on disabilities. I came to what I had written about myself pertaining to see the great imbalance on how such stories were disability, because, as I was told, “my disability was told: either really inspirational or really bitter. I not a positive thing.” It was a rough time - this and wanted to show the real life, the everyday story. other academic troubles mounted, my relationship I came to understand that when a person with ended, and a dear friend found I was too depressing a disability makes toast in the morning, it is not to be around. necessarily inspirational, it is just breakfast. Finally, my academic troubles caught up to me and I was academically dismissed. After a summer of pleading for another chance, I was accepted to study journalism. I had my second chance and was determined not to waste it. A very wise professor told me “You have to prove yourself this time.” He wasn’t wrong. I knew I had to seek help to succeed. In my time away I had learned there were more supports than I allowed myself to utilize in my first attempt at a post-secondary education. It was

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The day came when we had to choose our journalism field placements. I asked to do public relations for the ICHA as an effort to repay the gift they had given me. I proposed designing newsletters and videos to promote their efforts. While this was approved I was approached by the Program Director of CJAM radio about doing a show which I couldn’t then as I already had my placement. Upon graduating, however, I pitched a disability issues program to CJAM and was asked to record a demo.

IWO Magazine

As the station asked for a show title, my reply was “Handi-Link” as an homage to TV’s Quantum Leap. The nobility of the lead character had always resonated very deeply with me, but even though I was doing the show I was not done with the ICHA. They recognized what I was trying to do on behalf of the disability population and agreed to sponsor the work each year. I was doing interviews and sharing stories, yes, but I realized very quickly it is the small organizations that have the most heart for the work. I decided to focus my efforts on stories that needed to be told rather than being beholden to anyone’s agenda. In fact a friend asked me once “why don’t you work for commercial radio?” to which I replied “Nobody owns me this way.” I know that bigger name events grab the spotlight, but a foundation run by a parent looking for treatment options for their child is no less deserving of notoriety. After a year the show became syndicated. On average 7-10 stations across Canada run it week to week.

My record setting story, which was run by 16 stations, came from a source in the US government who shared the dehumanizing effect of the subminimum wage law. This law for decades has allowed workers with disabilities to be paid below minimum wage. Shining a light on this was one of the purest representations of why the work matters. It may be my most noted story, but not the only one reflecting persons with disabilities. My connection to the efforts of Disability Rights Promotion International out of York University led me to interview Bengt Lindqvist, a man who helped Sweden get some of its first documents accessible to the visually impaired. He explained to me the history of the disabilities rights movement. Every week tells a different story: it may be a woman taking blind children up a mountain or a historical look at the occupation of a federal building by people with disabilities to demand equal rights, but each reflects the heart of society and the best of us. I have been honored locally 3 times and twice nationally for the show, and had the opportunity to co-author a handbook on radio station accessibility for the National Campus and Community Radio Association. I have taken interviews from the show and designed a disability course for Canterbury/ Elder College focusing on the often undiscussed matters of accessibility.

Despite my belief that everyone with an interest in disability has a voice and a right to use it, I live by a simple rule – I will not put anyone on the air who will actively denigrate the rights of those with disabilities. I take issue with anyone using their disability as something to blame for not getting what they want and those who offer pronouncements about what a person with a disability can or cannot be in life because of their condition. This rule is key in that the show is a reflection of real disability life and the reality remains that too many of us live each day being told what we can’t do. I will not add to that problem. As journalists, we are told to keep a distance from the story. I don’t believe this is possible in that you must be passionate about it to put any thought or heart into a story. This is particularly true in a story one lives each day. Disability is not a hat we take off at night or once we’re out of public view.

It is my belief that the UN Convention on the Rights of Persons with Disabilities credo “Nothing about us without us” is especially true in that we must be our own advocates. It is our right to ask questions, seek recourse and guidance as needed. The community is not a full one without us. My experiences, whether triumph or tears, help me see each day the future of accessibility and that equality is a matter of what we make it. The choice to fight back against a bully in anger or to speak in wisdom is ours, as is the choice to face our condition or in denial declare ourselves “cured in a whirlwind .” As was once told to me by a recovering addict who after a very short time in treatment declared herself to be. It is a choice day to day how we view disability as an obligation we must accommodate or as human beings with stories, gifts and potentials all their own. Never underestimate the smallest message we can send as people with disabilities. Even someone who can’t speak may change a person’s whole outlook with just the right smile.

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Share Your Voice

Have Your Opinions Heard! By sharing your thoughts and experiences, you can help to improve the lives of other patients and caregivers. Researchers and companies need your input in developing new products, treatments, and services. Join Rare Patient Voice to take part in confidential surveys and interviews – and get paid!

Now accepting patients and caregivers from the United States, Canada, United Kingdom, Italy, Spain, Germany, and France Also

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Helping patients and caregivers share their voices

IWO Magazine

ACCESSIBLE EMPLOYMENT Nethra Silva The words “Accessible employment” and tbe autor of the article, Nethra Silva, are visible on a close up picture of a microphone. The lights and walls of a room are blurred in the background. Credit:smolaw11 The decision to become a fighter for the rights of people with disabilities was not just a coincidence in my life. Once, I met with a friend who I hadn’t seen in 15 years. Since it was quite a rainy day, I took off my jacket and hung it on the rack while folding my umbrella. Suddenly my eyes stopped in a place near the window, yet I was unsure if the person sitting there was really him. I went to the counter to buy a latte. Suddenly, my old friend waved his hand which made me turn back to confirm whether he was waving at someone else. ‘Yep, it’s you,” he whispered. It’s true I didn’t hear him, but I interpreted what he said. I sat opposite him and said, “It’s freezing.”

“I just lost my leg,” he replied. I was shocked, as I haddn’t even notice anything.

“I lost my right leg in the battlefield, and they sent me back. I wanted a job and did my best to one. I had more than twenty interviews, but they all just considered the disability I have. You know, it’s not difficult to understand that I cannot climb up stairs. It was so unfair how they always expected punctuality. I have a wheelchair, but I used crutches to climb. It takes time. Now it’s been more than six months. I’m still looking for a job, but no one will hire me.”

I felt a disgust about society when I heard he couldn’t find work. Of course, I feel as though we are still so behind in terms of accessibility. My country “Yeah, it’s quite cold,” he said. “So, how have you hasn’t even completed the minimum requirements been?” I smiled. He just murmured something I for global development. The way a person with a couldn’t get and stared at the raindrops falling. It disability is treated in society is unacceptable, I felt. As my friend was sharing these experiences he had, seemed he was meditating. I thought of how exceptional the sacrifice he made “Oops, sorry I just lost it. You asked something?” he on the battlefield was. Living with a disability has never bothered him. He was so proud to be accepted said, turning to me. for who he really was. “Yep, just asked how you have been,” I said.

We talked a lot about the economy and stability, and “I was serving in the army for the past two years and I couldn’t help but think how he had an amazing have been looking for a decent job to provide for my knowledge of trade and the international market. “Finding a job to provide for my family is just a family. You?” he responded. situation. The world deserves more. We deserve more,” he said. At the time, I thought about how I had “Still studying,” I said. “How was life in the forces?”

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never written about disability rights. It occurred to me how the matter of accessibility needs to be widely discussed. My friend was one of the best examples of an individual who required more accessibility. I had no idea of how I was about to help him make a change. I thought about how I might get backlash for helping him make this change due to the negativity in attitudes and views of many people about disability. I understood how disability is viewed negatively by people due to societal attitudes.

The attitudes of non-disabled people towards disabled people should reflect disabled people’s desire for and right to equality. I have heard from people with mobility impairments that they experience lots of inaccessibility at government centers, workplaces and specifically in government schools in South Asia. Children with mobility impairments in South-Asian nations have faced a huge dilemma for many years when it has come to buildings that lack elevators.

Even though education is a recommended right for all humans, children with disabilities often have to depend on their friends, caregivers, or someone else for help accessing buildings. Inaccessibility can never be justified, although solving problems of inaccessibility has not yet been prioritized. I have some recommendations about establishing accessibility rights for people with mobility impairments. In Sri Lanka, there is a proverb saying, “the answer is philosophical until the matter is not one’s own.” Except that for individuals with disabilities, society often does not have a clear I thought about people who challenged the obstacles, concern regarding the obstacles they face. One of and who fought against the injustice. I began to make the possible recommendations is to enhance the a change with my own words. I raised my voice in awareness for the need of accessibility, globalizing front of advocates for educational and employment the rights of people with disabilities. Even though it rights about the importance of including people with is difficult to spread the message with the magnitude disabilities, and how I felt people with disabilities of population growth, that is the key to creating an had been excluded from these systems for many attitudinal revolution. years. When I had the opportunity to speak about this in front of a large audience, I was quite terrified Installing an elevator and making a building and anxious. I felt they were going to stare at me accessible cannot alone help to draw the global when I was speaking. I felt that some of them would and governmental attention on the matter of learn something, and that some might not, but what inaccessibility. Organizations, groups, and advocates I wanted to do was make them aware of the impact have the responsibility to raise awareness of the of inaccessibility and the lack of employment on need for accessibility in government and sociothe lives of people with disabilities. I pulled out the cultural settings. Education is the most critical microphone and began speaking with confidence. topic globally because it leads to employment. In “Employment is considered as one of the most widely lots of South Asian nations, the lack of accessible discussed fundamentals of human existence which educational institutions is responsible for the has been evaluated numerically over the years, yet reduced participation of individuals with disabilities the number of employees with disabilities is very in the job market. Disability in and of itself is not low. Specifically, this can be seen in economically necessarily as limiting to the lives of people with developing nations such as in south Asia and south disabilities as inaccessibility is. Thank you.” The Africa. When it comes to employment for people audience was silent, but I have always heard that with disabilities, perhaps the most neglected aspect silence is one of the most powerful methods of which has not been considered for many years communication. The sound of applause began is accessibility because accessibility should be a quietly until it became as loud as a storm. human right, not a privilege. Even though culture can sometimes be ableist, I thought of how the world needs to change its attitudes about disability. For a moment, I felt how frustrated my friend was about life. That’s when I decided to advocate for accessibility for people with disabilities. “You cannot give up. Life is also as same as the battlefield you fought on,” I said. He said nothing but smiled and left with the crutches. I was watching him until his shadow disappeared. He caused me to think about how we have missed something as a community, as a nation.

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IWO Magazine

Everything I Needed to Know to Succeed at Work, I Learned from Paralympic Archery Sheri Byrne-Haben My rediscovered love for Paralympic archery has made me realize that there is a lot of overlapping meaning between these two very different worlds.

compound bow, because the longer recurve bows are difficult to shoot from a seated position due to their length. Additionally, shooting a compound bow requires less upper body strength because the “cams” (the gears at the top and bottom of the As part of the pandemic, I needed to find a safe way compound bow) offset some of the weight it takes to to get exercise. I am a wheelchair user, with fused hold the string back once it is fully drawn. ankles, a leg length discrepancy, a spinal curvature, and very bad osteoporosis. I am also in the category Safety is paramount with a very high COVID death rate, a combination of Maslow’s Hierarchy of Need is at play in both archery my age plus several acquired autoimmune issues. and business. It’s very difficult to be successful at The combination of those issues left anything aerobic either of these subjects while feeling unsafe. Playing or in public out of the question for safe exercise. either game equally if you have safety issues is next Just before the pandemic started, I rediscovered to impossible. Once my coach was late to a lesson my childhood passion for archery. Fortunately, I live because she was treating someone (not her student) in an area where I can do archery effectively in my who had shot themselves in the leg. In archery, safety is essential because you can seriously hurt yourself backyard. or others with wavering attention or a misplaced Shooting for an hour, for me, is better than shot. meditation. I can easily get into a mental state where I lose track of the arrow count — many times I will reach into my quiver, a sack for holding archery bows, for the next arrow, find it empty, and think to myself, “wait, I just started this round!” Practicing daily around the same time has also provided some much-needed structure to my work-from-home day, the way commuting used to. Beginning my daily practice sends my brain the signal “I am done with work.”

Safety is also important in business, but in the tech world, this mostly comes in the form of psychological safety. Employees who feel unsafe are not fully engaged. Lack of engagement costs American employers $450 Billion to $550 Billion per year in lost productivity. Teams that feel unsafe just aren’t going to be as productive. Innovation and high performance are also strongly linked to psychological safety.

Archery is a sport that people who use wheelchairs Getting outside independent advice is can do on an even basis with non-disabled sometimes necessary individuals. Most wheelchair archers shoot using a Many people who get serious about archery have

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them prioritize tasks more easily and efficiently. a coach. Even if you don’t have a coach, when you That is an arrow that will hit the target are shooting at a public range, especially if you are disabled, you get a lot of unsolicited advice from • When the goals align, and everyone is firing on all cylinders, that is a bullseye. people there who “just want to help.” Good archery coaches can use their experience to provide a critical eye to errors in your form that might be contributing to “flyers”—the one arrow in an otherwise good There will be bunch that is really far away, and you, the archer, problems completely can’t figure out how it got there.

out of your control

In business, coaching is also common, but comes in many varieties. There are executive coaches, life coaches, communications coaches, organizational development coaches. Closely related to coaching is mentorship and sponsorship. Each of these have their own part to play in a successful career. These are the people who can point out errors in your business form, which will result in improvement in your task execution - the business equivalent of the “shot”).

Wind, rain, equipment, mosquitos, heat — all of these will likely degrade your archery experience. You can even plan for them, and take steps to avoid or reduce the impact, but in the end, they are all completely outside your control. Bug spray and practicing early will only get you so far.

Always have a goal, even when you aren’t Angular release delayed aiming for a bullseye When training in archery, you don’t always aim for the bullseye. Sometimes you are shooting targets where you are aiming for the corners or the edge of something. Sometimes you are aiming at tin cans (hopefully with arrows that are already kind of trashed). Some people practice “field shooting” where they are shooting at targets the shapes of bears, deer, or whatever they plan on hunting.

When an employee sets goals, they are making their priorities clear for their co-workers, management, and cross-functional product team in the organization. • If the individual’s goals don’t align with the business goals, something’s got to give. That is an arrow that will miss the target entirely • When goals align, the employee knows exactly what they need to focus on the most which helps

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2 months? Massive AWS outage at the worst possible moment? Someone in theA close up of a hand holding and bow and arrow. Trees and green mailroom clicked on the background. wrong PDF and all your computers are infected with the latest virus? Welcome to the latest episode of “Business — outside your control” You can’t let these chaotic events get to you; you need to figure out a way to work around them. Disaster planning definitely helps in this department. The organizations that are doing the best in the pandemic are the ones that planned ahead of time for “what if we couldn’t go into the office for an extended period of time.” If you don’t have a dedicated disaster planning group, talk to some lawyers, especially ones who specialize in contracts. Law school finely honed my “worst case scenario” generator.

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Wobbling is not a good idea. Course in the center of the target. But competitive distance for a compound bow is 50 meters, not 10. If I just correction is. In archery, consistency is crucial. You want to release the same shot at the identical point using the same arm angle at the same point in time in your breathing cycle. When you wobble in archery, you have no idea where the arrow is going to go. The same is true in business. But if your arrows are clustered, just not around where you are shooting, you can “course correct” to get closer to your intended target. That is much easier to do than to figure out what is going on when half of your arrows are in the gold, and the rest are scattered across the target.

wanted to feel good about getting a bunch of arrows in the center, I could have stayed at 10 meters. But to grow, I needed to shoot from a further distance. A year ago, I moved to 20 meters. It was 2 weeks

before I hit a single shot in the bull’s-eye again. Now I am at 40 meters, and I regularly get half of my shots in the bull’s-eye again, even though I am shooting 400 % longer distance. I also increase my draw weight a ½ pound every 3 weeks. That has gotten me from 20 pounds of draw weight when I started to more than 40 pounds of draw weight in less than 2 years. When I make it to 50 pounds weight, I may get a more elite bow and will move to heavier arrows with finer tolerances which will allow me to shoot further with less interference from wind. Adjustments to weight and arrows always alters my release point. The additional weight makes things harder at first, but it In tech, fail fast methodology is a much better shot in the long run. Then I make it is your friend. It provides a harder again, and again, and again. mechanism for easier course correction for work projects Growth in business also requires going out of your by identifying the highest risk comfort zone. Want to become a manager? You need points for failure and then to be able to resolve conflict, run projects, assign d aiming an archery investigating those first. That resources, and possibly most importantly, learn how nery are visible in the way if the failure does occur, it to say no. By intentionally focusing on personal and has happened quickly, and you can implement the business growth, employees become more invested recovery steps faster. You need to prepare your fail in themselves and the success of the company. People engaged in personal growth are often more fast approach and then execute it. productive, have lower stress levels and produce better and more consistent results.

Growth requires going outside of your comfort zone

When you get good at something but are not yet the best, you won’t become the best unless you make it harder. By making something harder in archery, you are inherently accepting that you might get worse, but then hopefully slowly improve.

Celebrate small wins

Every time I move further back in distance, I celebrate. Not because I will be any good at that new distance, but because being able to shoot accurately at 50 meters is the price of the admission ticket to be in public competition. The celebration will be that I When shooting at 10 meters I could get 5 out of 10 MADE IT to that level, as compared to the first arrow

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I shot which went less than 10 % of the competitive distance.

Celebrating small wins gives you building blocks and confidence to get to the next level. If I didn’t allow myself to be pleased with my work until I got to the first competition, I might have given up part way through because I didn’t feel like I was making progress.

Not every arrow has to be shot

The most important thing my coach said to me in my first lesson was “Not every arrow has to be shot.” I had one shot at the end of the session when I was getting tired and as soon as I let go, I knew it wasn’t going anywhere near the target. Business is similar in that frequently you have “feelings” about how things are going to turn out. It’s called your gut. You have to learn to listen to your gut and let it advise you. Even if you aren’t going with your gut, make it a conscious decision and know why you made that decision. If your gut goes wrong, learn from it. Sometimes you know from just how a meeting e-mail invite is phrased — who it came from, the fact that it is agenda-less, that the meeting is going to be

a complete disaster. Don’t shoot that arrow. Think about how you can mitigate the disaster *ahead* of the three-car business pileup that you know is coming by having a pre-meeting communication with either the organizer or the attendees to be more prepared for the meeting.

In the context of archery and other sports, psychologists use something called “dispositional mindfulness” to teach sports participants to become aware of personal thoughts, feelings, and other internal stimuli. After awareness is achieved, the participants are urged to use that information to focus on skills and game strategies, instead of focusing on performance outcomes. Mindfulness also applies to the business setting. Applying mindfulness practices to work improves productivity, creativity, and decision making.

Cross-training is crucial

In archery, the two primary forms of cross-training are anything that improves upper body strength and mindfulness training. Without some combination of all three, you will never be Katniss Everdeen. In the business world, and especially in tech, cross-training comes in the form of agile, program management, conflict resolution, and communication skills. Anything you can do to make yourself more valuable in the position you are in, but that isn’t directly related to your main tasks? That is business cross-training.

Practice, practice, practice

Muscle memory is important in both archery and business. Archery is about coordinating your hand and elbow position, bow movement, breathing, and release and doing it again and again. When your first arrow hits the gold, you want to do eleven more just like it. The only way to get consistency at that level Mindfulness never hurts is to practice a ridiculous number of hours. When I Have you ever heard of being “in the zone?” Of course started, I shot 25-40 arrows a day. Now most days, you have! It’s when everything seems to be going I shoot 100. In the 17 months since I started daily your way effortlessly. This is true in both sports archery practice, I have shot over 28,000 arrows. and business. But being “in the zone” seemed to be To be a serious contender, I will need to shoot 240 largely a serendipitous event until someone drew a arrows every, single day. In addition, I will need link between being in the zone and mindfulness.

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to spend time on competitions, cross-training, and researching and trying new equipment and techniques. Reaching the Paralympics will literally be like having a part time job that is restricted to being performed only in the daylight.

With adaptations, all things are possible

I shoot seated, which inherently requires adaptations that other archers don’t have to make. Pulling my arrows is harder, I can’t wear a hip quiver to hold my arrows, and I have a chunk of non-moving vertebrae at my T4 vertebrae. But, through trial and error, I’ve Finding and establishing best business practices been able to figure out adaptations for all of these also requires repetition and research. You need quirky issues. I shoot on lower targets at home that to find and utilize the optimal operationalization I can reach from my chair, and only shoot at public methods to reach your business objectives. This ranges with friends. I use a traffic cone to hold my requires staying on top of the newest trends of, arrows. My anchor point for my shot is quite high in comparing them to your ways of handling those same order to work around the spinal curvature. operations, and making alterations when needed. Using established standards and measuring where At work, I have accommodations to make my your business falls short will help identify the gaps. workday equal to everyone else’s. A desk that goes up and down, conference rooms marked for At the end of the day, the person you are wheelchair accessibility, an email outage notice list competing against is you if an elevator breaks, lower places in the break room Looking at yourself as your primary opponent gives for coffee, and we are slowly working to make all of you a better yardstick by which to measure your the software we use internally completely accessible success in both archery and business. When I went to people with disabilities. to my first competition, I got trounced by a former USA Archery team member. My scoring goal was Trying something, whether in business or archery, 550, and I shot 549. I could either look at it like the means you have to be prepared for it to fail, and glass was half full (“It was your first competition, have a plan for what you will do (Plan B) if what and you finished within a point of your goal”) or you try doesn’t work. But the worst adaptation the glass being half empty (“You lost by almost 100 or accommodation is the one that you don’t try. points.”) People who chose the former live to shoot Because then you will never know if it will help. another day, they don’t get mired in negativity and frustration. Looking at what other people do also limits your thoughts about what you are capable of. Effectively you are looking through THEIR lens rather than your own. Measuring your business success by looking at what you accomplished versus what peers accomplished is not productive. You never know what hardships you faced that the other individual didn’t, or what help the other individual received to be successful that you were lacking. Compete against yourself.

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Challenge Accepted By James Pittman I’m an online and print newspaper editor from

Northeast Texas. I have been a journalist since I was A couple of years later I was in the fifth grade, and I a kid. I was also diagnosed with schizophrenia when was looking for a club to join. The journalism club had

I was nine at a hospital in Luling, Texas. Exactly openings, and I loved writing and the news, so I gave how did I find that out at that age? Truth be told, I it a shot. I interviewed the principal and got my first remember hearing voices from the time I was four.

My life actually ended up

being

completely

different from the way

I planned it. I originally

intended to marry my high school

sweetheart.

But

circumstances ended our

relationship, and through happenstance I was placed

in a group home. But my

story is unique. In spite of this, I rose far and above

the mire and muck and created a life for myself.

byline. I moved shortly thereafter and found myself

in a different school. My

teacher, Mrs. Norwood,

asked us to write stories. I then whipped out my new newspaper,

The

Sulfur

Bluff Newstory. I asked her if she would like to have a few copies made.

She said yes, and I printed some copies of the paper. I went to the office and

got a few copies done and stapled. When I was on the way back to class, a

friend of mine looked at James Pittman, a caucasian man wqearing a black me and said he wanted to Here is how it happened. shirt is similing. One of the fingers on his hand rests against the back of his head, the others on his know if he could have one. shouilder. He is pictured against the backdrop of a In 1980, at Christmas, I told him it was 15 cents. tan wall. my mom bought me a He then proceeded to hand me a dime and a nickel. kid’s typewriter. I loved writing and was one of the best writers in my class. I was very good at writing

I didn’t know if at the time, but I had just founded

a clear understanding of the subject I was writing

broke about the space shuttle Challenger exploding

stories that were short, to the point, and informative

the Sulfur Bluff school paper. My big break as a

and interesting. I had command of both subject and school reporter occurred on January 28, 1986. That audience. I didn’t mince words, and the reader had day, just as the paper had finished printing, news about. I published only two issues, but I was hooked.

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during launch. After quickly confirming the story, I

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interviewed students on the school bus.

started the San Angelo Echo-Editor on March 10,

the special ed class, but I still wanted to write. One

the first year. I have had a long, successful run. I have

After I moved to Breckenridge, Texas, I was back in

day, I managed to finish my work way earlier than

expected. So, I started brainstorming and came up with a new publication. I called it The Horseshoe. I filled it with plenty of really good content.

Unbeknownst to me, my teacher Mrs. Boyd, was peering over my shoulder, and taking an interest,

she and I went to the main building to find Mrs.

Robbins to show her the newspaper. Impressed, Mrs. Robbins asked me to be the reporter for the Life Skills Center for the Saddle n Spur. I wrote a few

articles and thoroughly enjoyed reading my work in the school paper.

1997. I had just six readers for the first issue but

grew to 40 subscribers and a few ads at the end of been featured in radio commercials, program ads

and media guides. My website is read all over the world. My

accomplishments

include

traveling

Washington, DC, and covering the 2001 National

Scout Jamboree, interviewing Dr. Sergei Khrushchev,

and former President Bill Clinton during a February 2008 campaign stop. I am now editor of The Texas

Post, an online and full color print publication. I love writing daily. And, I hope others enjoy my writing, too.

A few months later, it was summertime, then back to

school. By chance, I was eager to see what I could do with the idea for The Horseshoe. I put two dummies together, the latter of which got printed.

The first issue covered the miraculous rescue of Midland, Texas toddler Jessica McClure. The whole

nation was transfixed by the event, and everyone

cheered, and shed a tear or two of joy when she was

pulled up from the well. I remained the editor for three years. But it was my senior year that changed

my focal point. I was determined to start asking

tougher questions. And, needless to say, I got in trouble.

After graduation, like I said, I wound up in a group

home. It is here that another interesting chapter began. That is when the writing bug hit again. I

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The Benefits of Pursuing a College Degree Christine Gray

People pursue a college degree for many different reasons. If you’re a person with a disability and have the opportunity, it’s more important for you to pursue a college education than you might realize. This article is going to explore the many benefits you gain from going to college if you are a student with a disability.

yourself and gives you an opportunity to learn how to become more independent. You have the chance to become familiar with all the available resources you could use to increase your independence once you finish college and move to the next stage of life.

Even before you leave high school, you probably participated in your IEP A diploma wrapped in a red ribbon lays beside a The idea of going to meetings. During these black graduqation cap with a yellow tassel on it; college as a student with Photo credit: Michael Burrell meetings, decisions are made a disability can be both exciting and scary. It’s a time in your life where you’ll have the chance to explore your interests, meet new people and begin to make a mark on the world around you. During high school, you start to learn how to be independent, but going to college helps you see the range of possibilities available to help make that a reality. Once you graduate, you can spread your wings even more. Maybe it’s the first time you are living away from home. Maybe it’s the first time you are navigating life with your limitations, whatever they may be. Going to college gives you the chance to learn how to navigate different scenarios in life so that you can have the most fulfilling experiences possible.

Education expands the number of opportunities for people with disabilities. It allows you to grow your network of connections for your career and personal interests. The college experience gives you the educational background you need to be competitively employed in the future. It also gives you an idea of how to begin to advocate you for

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on the accommodations needed to help you be successful in the classroom. These meetings allow you to learn useful techniques on setting attainable goals for your future. It’s great practice for you to see what steps are necessary to set and achieve realistic goals. It also gives you a chance to learn about services, modifications and accommodations available to be more independent in life. This will help you when you go to college and have to ask for the same accommodations. You will already be armed with a basic idea of best practices on how to request services from the disability office or other areas of the college that are there to help you.

Advocacy is a key component to maximizing the options available to you when living with a disability. Advocacy is an effective way to get what you need and speak up about what is important to you. Learning how to advocate and deciding what issues are important to you will begin to make itself known as you go through college. If you want to get involved in the disability field or any other social cause that

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is important to you, the time you spend in college can help you figure out what is most important to you. There are many issues to pick from where advocating can make a difference. Research each one and decide which ones you believe you would like to pursue. Everyone can spark positive change when they advocate for issues that are important to them.

a mobility assessment done to figure out if getting a car is a possibility for you. You can even learn about the adaptive equipment you might need so that you can drive. Services like ride share, paratransit, or public transportation may help you increase your independence too.

Many people have fond memories of being in college because of the fraternity or sorority experience they Immersing yourself in a college setting gives you an choose to have. Even if you don’t choose to be in one opportunity to learn about different disabilities and of those, the college experience allows you social learn how to get yourself the accommodations you interaction with other students. may need for school. Whether it’s a note taker, or extra time, there is an accommodation that will help During your college career, you will be exposed to you fully achieve your goals you set for yourself as a people from different backgrounds. This allows you to gain a different perspective on different customs college student. and also helps you increase your cultural awareness. Any student disability services office located on This is important to help you become a more wella college campus can be a key ingredient to your rounded individual. You can also help someone academic success. They will have procedures that learn more about diversity and inclusion. You can need to be followed to get the accommodations and give them the opportunity to learn about you as a other assistance you need to be successful in college. person with a disability. In college you will also have Becoming familiar with how to utilize their services an opportunity to be in social settings that you may and the types of support they can offer will reduce a not otherwise experience. This allows you to grow as a person and learn about yourself and how to lot of stress. function in relationships. A college experience gives you the education you need to reach your career goals. College prepares In conclusion, getting a college education has many you with the skills you need so that you are job benefits for anyone who chooses to journey down ready when you graduate. If you can, use an agency that path. For a person with a disability, pursuing an after college to assist you in your job search. This can education after high school and learning the ropes make it easier for you to become gainfully employed. of what it is to be independent will be invaluable Depending on your career choice you may have to to you. Maybe it will help you decide what career path to pursue. Maybe you will find out more take additional steps to go to graduate school. about yourself as a human being and learn what’s As a student with a disability, you may find that important to you as far as your interests separate you need certain modifications or accommodations from educational goals. I highly recommend you to live independently. College is the time where embark on the adventure a college experience can you get to experiment with different pieces of offer. It will pay you dividends for years to years to technology that can maximize your independence. come. There are also agencies that can provide funding, resources and equipment to help you figure out what will work best for you. If you have an issue with transportation, college is a great time to have

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SOCIAL WORKER TO DESIGNER CARON MCLUCKIE In January 2016, our lives

face when trying to find

son Emile, he suffered a spinal

Students

changed forever. One Saturday

afternoon while out with my

no warning! The spinal stroke

Melissa

Everett

were

Rebecca

and

front opening joggers,

I was amazed

and they wanted to make

at how well Emile coped

a prototype.

with this traumatic event; his

The Product: adaptive joggers/ trousers

resilience was astounding.

Emile has no bladder or bowel function, and he must

self-catheterize to empty his

once we got into our daily

when

excited by my idea of fly

left him paralyzed from the

bladder. It soon became clear

clothes

they return to work.

cord stroke, just like that, with chest down.

suitable

Emile is pictured sitting in a chair against a routine that clothes do not blue wall. He is wearing a pink shirt with a fit properly while sitting in design on it and the wearing the joggers.

Bespoke joggers with

a unique opening to enable

comfortable

dressing and catheter-

the wheelchair. More importantly, the comfortable

izing are higher at the back to avoid sagging while sitting and transfer-

The Idea!

I have been working with a small focus group

I researched and spoke to a range of people including

with cerebral palsy. We identified that there is a

joggers (trousers) that Emile likes to wear do not provide easy access to catheterize.

wheelchair users, caregivers, physiotherapists, and

occupational therapists to find out the issues they

faced when getting dressed or supporting someone getting dressed. With this research, and my own

experience with Emile, I approached The Fashion Institute at Manchester Metropolitan University. In conjunction with the Stroke Association, they had

been researching the difficulties stroke survivors

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ring to ensure everything is covered!

of people, who range from having a spinal cord

injury in adulthood to people who were born difference in muscle mass in the legs for people

who cannot weight bear or have been spinal injured for a long time and lost muscle mass over the years. Therefore, we are redesigning the joggers to have

a slim fit leg (which is fashionable presently) and

we will also have a regular fit for people with more

muscle mass on their legs, to ensure a better fit for different disabilities and all shapes and sizes. A

IWO Magazine

small run of the joggers will be made and launched in September 2021.

Testimonials

Having been a paraplegic for over 35 years, I am familiar with the search for comfortable clothing that looks and feels great but is practical for the kind of user that sits down all day. The Bealies Joggers are the holy grail of leisure wear for wheelchair users, particularly if you self-

size down. Andrew, Lancs

Me!

I am a mother of three children, Theo, 26, Emile, 19, and Esther, 17. We live in Stockport. I have taken early retirement from my career as a mental health

social worker and felt ready for a new challenge. I believe in the product and feel that there is a gap

in the market for casual wear for wheelchair users which is fashionable as

catheterize.

well as functionable. Esther’s nickname for Emile

With the offset zip it is possible

is Bealie so I decided to

catheterize

name the business Beal-

yourself easily, without

ies adaptivewear.

fuss. With that is the

passionate about sup-

quality of materials and construction

porting

these

mother was a home ma-

soft and durable, the zip is large and easy to grip, the a higher back to keep you

manufacturing

in the UK because my

pants. The material used is

seat is manufactured with

I am

Four men in wheelcahirs are pictured on a racing track. The first man to the left us African American. The three men to his right are Caucaisan.

covered. There is a pocket on the front/side to keep your mobile phone where you need it.

The Bealies Joggers have been well thought out, well designed and well manufactured and you should buy yourself some today. Phil, Cheshire I wore them on Tuesday for teaching PE. They were good as they did not fall like other pants. Plus, the zip bit at the side helped when catheterizing. The leg part fit well - especially when transferring. Plus, I was able to pull them up while in the chair. I will send you a pic when I wear them again. Prob next Tuesday. Overall, I loved them. If I were to buy a pair, I would get the next

chinist

when

clothing

manufacturing in the UK

was strong. I will be producing the joggers in En-

gland and have identified

a manufacturer in the Midlands.

Show me the money!

I have been crowdfunding to raise money to fund the first run of the joggers. I am producing a small

run of the adaptive joggers to identify any problems

with the product in the development stage, fine tune the patterns and materials before producing the joggers on a larger scale. The crowdfunder

campaign is still live and open to pledges. https:// www.crowdfunder.co.uk/bealies-joggers

Adaptive clothing market

In the UK there are approximately 1.2 million

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wheelchair users and 13.9 million disabled people.

I want to continue to manufacture the products in

There has been a rise of searches on the Internet for

adults with learning and physical disabilities to learn

(Family resources survey 2016/17)

the UK and would like to set up as a social enterprise

and open a micro factory where we can support

adaptive clothing. (Global fashion search Lyst 2019) a trade and make the joggers and other products The only mainstream designer who has an adaptive

range at present is Tommy Hilfiger. However, their

here in the UK.

clothes are expensive and sold as part of a designer References range which is not accessible to everyone. • h t t p s : / / w w w . t h e g u a r d i a n . c o m / The disabled market is worth £249bn ($343bn). Known as the “purple pound”, they remain the largest

untapped consumer market. Last year, Coresight

Research even estimated the adaptive clothing market would reach $288 billion in 2019.

The UK high street does not yet reflect this shift. Unlike the US, where a handful of mainstream

stores have adaptive lines, UK retailers remain slow

to enter the market. Designers must address the

unmet demand for disability-friendly workwear and occasion wear as identified in the project with Manchester Metropolitan University. Marks

and Spencer are selling an easy dressing range for children in stores and online and as mentioned

above, Tommy Hilfiger has had some success with

its inclusive, yet expensive, range of clothes each

season. There is a clear market for my clothes and my business has the potential to grow.

The future for Bealiesadaptivewear I would like to continue to add to the collection using the template of the fly front opening to use different materials, adaptive shorts, longline t shirts and

unisex pieces to be more inclusive for all disabled people. The range will model mainstream fashion and will be updated seasonally.

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fashion/2019/dec/30/why-2019-was-alandmark-year-for-disabled-fashion.