Imagine the World as One
Stephanie Woodward
And the power of female representation in the disability rigths movcement
PLUS
Disability representation in film
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Agriculture and success for people with disabilities Page 2
Issue 3 | Spring 2021 An Exclusive Disability Lifestyle Magazine
Imagine the World as One Issue 3, Spring 2021 EXECUTIVE EDITOR Evan Trad
EDITOR
Miranda Belle Brent
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 World as One (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 real-life examples of those who have moved from limited to limitless.
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IWO Magazine
CONTENTS 4 7 8 11 13 14 15
Clique of Crips: The Importance of Having A Community as a Budding Activist Anja K. Herrman
The Malingerer Goes to the Movies (a Dis-Ability Comingout Poem, for Colin Kempner, and Judith Wright)
16 Profit vs. Accessibility Call For Inclusion 18 Casting and Awareness Richard Acree
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Scott Norman Rosenthal
Looking At Trauma Through the Eyes of Your Inner Child Lori K. Brooks
How to Ask for Disability Accommodations Michelle Steiner
Autism and Dance Briony Mikkell
Poems by Gafsa Garson
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Jillian Bleackley
Agriculture and Success In Zimbawbe Stanley Mushaninga
Stephanie Woodward: The Power of Female Representation in the Disability Rights Movement Molly Wiesman
Women’s History Month: A Disability Perspective Nicole LeBlanc
Fitting Furniture for People with Disabilities Andrew Morgan
A Journey of Hope to Advocacy Forzana Nasir
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Names Changed for Privacy Community: (noun) “A feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals” (Webster’s Dictionary).
Everyone wants to be a part of a community, to have a group of people like them, friends who know them better than they do themselves. As a young disabled person, I found it hard to find my community of disabled mentors and friends, and sometimes it felt like I was searching in a dark tunnel for some elusive treasure that was just out of my reach. I live thirty minutes away from Chicago, a city famous for pizza and a bitter rivalry between two baseball teams. The city’s night life is eclectic and expansive—a far cry from the cookie-cutter suburban neighborhood I was raised in, where the “night life” is riveting town meetings discussing deer removal and sewer systems. While the small-town factor is charming, my family and I escaped to the city as often as we could because once you’ve sat through one town meeting, you’ve sat through them all. In particular, on these city jaunts, I was always looking for other disabled people to have wheelchair races with, to have people to talk with about the elevator at school breaking down, or to have comrades in the fight for equality bills to be passed in the Senate—a community I didn’t have at school.
Clique of Crips: The Importance of Having A Community as a Budding Activist Anja K. Hermann
The leaves and branches of a cherry blossom tree are visible against a bright blue sky.
chair as the other members of my group blocked the office door with their chairs. I leaned back and gave myself a quick pep talk, my body jittering with anticipation. Okay, this is it. We drove all this way, so you better fight to get this bill passed, I told myself as the nervous anticipation switched to the excited kind. Momentarily, the internal office door swung open, and the congresswoman’s chief of staff came out with a smile that looked like shark fangs. We all I rolled up the ramp to enter the hallowed hall of the spoke in turns, giving our impassioned speeches United States Capitol with my six fellow comrades. on the importance of the bill which we wanted the We looked around at the grand lobby, passing representative to co-sign, as the staffer—we’ll call around the paper map we got at Guest Services with her Jen—sat at her desk putting on an Oscar-worthy furrowed brows, looking for the congressional office performance of feigned thoughtfulness. where we attempted to get a meeting. “You guys, I’m sure this is the right building. Look, there’s the It was my turn to speak next and I was elevator,” said my group leader, Lea. We all piled into uncharacteristically nervous, my mouth going dry the elevator, our mobility aids so close, you couldn’t as my brain went into a land of fantasy, where in tell where one ended and the other started. We exited twenty-five years, I would be the representative— the elevator, and Lea led us down a marble hallway or, if I were honest, President, sitting in an office just adorned by flags representing different US states. like this one, my passion evident as I governed. The We entered the heavily carpeted office, and I hopped fantasy abruptly ended, as my comrade wrapped off my mobility scooter and sat on a plush office up her statement, and I thought, screw it, this is my Page 4
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chance to knock this speech out of the park, so let’s do it! I stood on my scooter to feign importance, as I started to deliver my remarks. My mom, sitting in the chair next to me, looked on proudly, and I saw the rest of my group pass small smiles before plastering back on their stone-faced advocacy veneer. I finished and sat back down, intently focusing on Jen’s eyes while brushing lint off of my sensible dress with pale pink buttons and a polka dot collar.
detailed list of exactly what and what not to bring to a government building. All was going well in the conversation, and my purple flair pen was getting plenty of use, until Otis said, laughing, “And, obviously you can’t get arrested, since you’re under eighteen, but the other people around you probably will. Most of them wear it like a badge of honor.” My purple pen made jagged lines on the notebook paper as my mind ran rampant with fears. Are there going to be cops there? Is this a smart thing for me to be doing? Jen sat up and looked right at me as she spoke Phase Two was, as most things about this entire day, about how great it was that we were there, or how in equal measure enthralling and heart stopping. important our cause was. Once we got our group Lea asked if we could talk assignments and schedule to the congresswoman. for the following day, Lea That was our cue, as we pulled us into the hotel sat up straighter, and “ballroom” which had been our hands instinctively converted into the snack clutched ourwheelchair room, filled with packages joysticks ready for what of bottled water and every everyone else called fun, chip flavor imaginable. and what I thought was She told us with a grin just slightly terrifying. Jen’s that Phase Two meant eyes widened, and she told “theater,” where we tried us that she was going to go to get our target to come check her schedule. The out for an audience with minute her suited frame us. I asked what “theater” crossed into the inner was, because in my mind, office, Lea told us that it theater was Hamilton or was time to commence community productions Phase Two of the plan. of Grease, not an advocacy group tactic. Lea winked Phase Two had a status of at me and said, “Theater is mythic proportions in this Anja, a caucaisan girl witk brown hair wearing when we use media, which group and I desperately sunglasses, stands on her scooter with her arms you are going to pretend wanted to learn about it. upraised and the U.S. Capitol building visible in you haven’t seen, even if Am I getting handed the the background. you have, to try to get points keys to a metaphorical kingdom? I wondered, clutching my notebook full of across.” I said that I understood and smiled at Lea as logistical questions as I looked for the other group we exited the hotel into the spring Washington DC leader Otis, to rapidly fire questions to. morning, the last petals of fallen cherry blossoms littering the sidewalk. Thankfully, Otis took my incessant inquiries in stride, answering all of them with as much detail Which brings us back to that office, as the same as possible, so that, ten minutes later, I had a grin overtook Lea’s face, and James, Lea’s husband, Page 5
pulled up the videos we were going to play on his Mac, all in an attempt to get a signature on an allimportant piece of legislation. The video played, the intro music filling the wooden paneled space, as I sat, straining to hear reactions from the inside of the closed door. After a while, Jen came out again and kept making up excuses about why we only got her to speak to. She went back into the room, this time claiming to check on the plane flight status, because . . . oh, yeah, now the congresswoman was on a plane and wouldn’t be back for an “indeterminate” amount of time.
as we started to laugh about the absurdity of the day and how tired we all were. As I sat there, shoveling chocolate candy into my mouth (don’t judge me, I hadn’t eaten for a while), I felt it: the thing I had been looking for since the first lunch period at school, the threads of a blossoming community. These threads were as precious as gold to me, webs of joy and connection which I wanted more than anything else in the world to keep spinning, tethering me to these people, this freedom, all the way back to my smalltown life.
Let’s switch gears for a moment and talk about Once the latch clicked on the door, everyone started resources YOU can use to get involved with a pulling pillows and rolled-up coats out of tote bags, community. First, try to find an interest (or several!) much to my confusion. I whispered to my mother to connect with people! If you are a theater nerd, join frantically, “Are we sleeping here?” a local theater group to perform shows with. Same for cooking, baseball, tennis . . . join SOMETHING She whispered back to me, “I don’t know. Just use and you’ll find a group of people just as passionate this!” and passed me an extra sweater. I watched as you! If you are looking for disability-centric the plain clock on the wall as the minutes inched by. organizations here are a few resources. I hope you Weirdly, I felt like I was back in math class, waiting find your group of comrades to have wheelchair anxiously for the bell to ring when I could be liberated races with or eat pounds of chocolate with. from the pain of learning about scale factor, instead of being hundreds of miles away in an office that we learned about in history class. I sat in that plush RESOURCES chair for four hours, participating in various civil disobedience tactics with a rapidly draining level https://tellintales.org/ (A theater organization for of energy. We chanted “Disability rights are civil both disabled and nondisabled theater performers) rights” from our chairs, using a megaphone made from paper, for at least fifteen minutes until Jen Your local ADAPT chapter- https://adapt.org/ came out once again, and her eyes widened, as she (ADAPT is a civil disobedience and disability rights maneuvered around the bags and blankets draped group found across the country) on the floor. The picture of calm, she asked with a monotone voice, “What exactly is happening here?” The National Council on Independent Living: https://ncil.org/ (NCIL is a national disability rights The informed members of the group all responded organization, focused on civil rights from a policy that we would be sleeping on the floor. Jen’s face lens) went slack, and her mouth made an O of surprise, as I’m sure mine did as well. My mom stepped on my foot, in a silent way of telling me to close my gaping mouth before I let frogs in. Jen stammered something and broke into a run, once again going into the mysterious staff room. I pulled out a bag of Reese’s peanut butter cups and offered them to the group, Page 6
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The Malingerer Goes to the Movies (a Dis-Ability Coming-out Poem, for Colin Kempner, and Judith Wright) Scott Norman Rosenthal 1. You’re sitting there, and it’s getting harder to breathe. It feels as if a little man, like a gnome, has crept up the back of your seat, and dropped a net into your head, over your brain...
You glance at the woman sitting next to you, and she isn’t there... You look at the screen, and it seems unreal, like a bad film... Are you in a theater at all? Are you in a room filled with water? ARE THERE ANY PEOPLE HERE!? 2. Show’s over, you’re out in the parking lot, wondering how to get home...
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LOOKING AT TRA a UMA THROUGH THE EYES OF YOUR INN n ER CHILD LORI K. BROOKS
Hello, I am Lori Brooks. Grab some coffee, I am about to tell you my story!
A multi-colored silhouette profile of a person is filled with swirling colors. Agsandrew
My parents often fought in front of my sisters and me, which made us feel insecure because we did not know exactly what was going on. I remember being belittled while always being told that I had to be a good role model for my siblings. (To me that felt like pressure to be my best all the time.) I was always feeling I did not do well enough and that I should have done better. I was always taking things personally. It took a lot of years to realize that it was personal because it was about me. I took things to heart all the time when people pointed out negative things about me. Thinking about it now, I realize that my innocence had been taken away from me. I believed everything I was being told by my parents, family members, and peers.
When I was twenty-one, I reconnected with a guy that I had gone to school with through a friend. He was on the same bowling team as my girlfriend. I was working at the Becker’s store in Bowmanville. He walked in and my jaw dropped. He was dressed like a cowboy, with a leather coat, boots, and a cowboy hat. We started nightly rendezvous. I found out after a while that he was engaged to be married and was seeing me at the same time. I was heartbroken. To make a long story short, I was pregnant. We went to court, and he denied paternity and support.
I am a single mother, with a grown son, a daughterin-law, and two beautiful grandchildren. I have lived in Oshawa, Ontario, for over thirty years. When I was a young girl, I had depression. I wanted to sleep all the time and was also shy and introverted, with a lack of motivation. Something else I always did was apologize for everything. I was blamed for being lazy.
I remember when I was eighteen, I met this guy Page 8
through my cousin. We ended up getting engaged and were together for three years. During that time, he took me to parties and introduced me to drugs. So I was drinking and doing drugs. I remember a party so vividly, a corn roast in Port Perry. We were sitting at a picnic table, and I didn’t realize that someone had put something in my drink. I was sick to my stomach; they took me in to lay down. By the time my fiancé took me home, I was wobbling all over the place.
Here I was, twenty-seven years old and still living at home with my parents. I knew it was not a good situation because I had two siblings. The house
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was full as it was. I had to go on welfare and put my name in for government housing. I ended up moving to Oshawa to a one-bedroom apartment. It suited us for a little while. My son was learning to walk all over the place, and we lived in an apartment that was located upstairs of a house. I had to put a gate at the top of the stairs to prevent my son from falling down. Plus, there were mice in my kitchen cupboards; it was not a healthy living environment. We were there for eight months until we finally got government housing. It was wonderful. I was so excited for the two of us. It was a two-bedroom townhouse with a front yard and a backyard. But as great as it was, I had noticed my emotions going from extreme highs to extreme lows. They were being manic, although I did not know that at the time. I became close friends with a neighbor across the way. We got together daily for tea, which turned into pots of tea. I have learned that caffeine is an upper, and it was giving me major mood swings. I also got into drinking because there were a lot of parties going on in the complex. Alcohol is a downer, plus I was smoking cigarettes (which was an upper). I did not care because I was having too much fun at the time. We lived there for twelve years through difficulties and good times. To earn extra money under the table, I took on a job picking apples. I also worked on a farm picking vegetables. I was still crying quite often because depression was still with me. I was not sure how to raise a child when, deep down, I was a child in an adult’s body.
sat and listened to what was being said. It gave me an epiphany because it made me think about what I was doing with our lives. One morning, I saw a flyer in the mail about going to school. The thought of going, meeting new people, and learning again excited me. Still in my twenties, I decided to go back to school to learn computer skills. My mother told me I could not do it and raise my son at the same time. I went there for ten months and received my diploma as a business administrator. I felt so proud of myself being able to carry out what my mother had said I could not do. I continued living life the best way I knew how. I knew depression was still with me; I could feel it through my whole being. I had noticed the weight gain, emotionally eating all the time. I felt no motivation to do anything. I was not a good role model for my son, and I was constantly unhappy and grumpy. I slept and cried often and had feelings of letting my son down as well as myself.
A few years later my family doctor prescribed nerve pills for me, seven to be exact. He said to not take them unless I was ready to explode. The nerve pills helped for a few years! As time went on, the anxiety and depression kicked into high gear. After a while, I decided to see another psychiatrist. I did not like him. We did not connect like I had with the first one. I remember he had prescribed Prozac to me. Not realizing the lengthy list of side effects, my mother kept asking me if I was all right because I had an I-do-not-care-about-anything attitude. I showed no emotion! With everyone telling me I had changed, it got to the point where I wanted to hurt someone. I decided to go off the medication cold turkey, against doctor’s orders. I was not on them for long. The doctor wrote in my file that I was ready to go back into the workforce. I totally disagreed with him and quit going to him.
My family doctor recommended that I see a psychiatrist. I thought it would be a promising idea! The first doctor I saw was helpful in the sense that he got me to analyze my feelings and to figure out that I did have a voice. He got me to question situations, people, and most of all, my growing up years. I cannot recall why I stopped seeing him. Going to that doctor was helpful. However, it did not fix what I was going through. My anxiety and depression started affecting my body. I could not stand properly and had pain in my lower I had been sleeping on the couch, and I woke up to back. All my weight was at the front, forcing me to see a program on TV. It was The Hour of Power. I lean forward. I walked that way for a full year. When Page 9
I walked, I found myself having to sit often. The pain intensified to the point of where I was breaking out with cold sweats, with anxiety increasing. My last job was as a taxi driver. I drove for six years, and the weight was pouring on because of all the sitting I was doing and because I was always going through Tim Hortons having donuts, bagels with cream cheese, etc. After driving twelve-hour shifts all I wanted to do was sleep. My body was exhausted. Finally, I had to give in and quit driving taxis! My depression was getting worse. I did not feel good about myself, and I was anxious because I no longer was working. During this time, I had rented a bedroom from a colleague that worked at the same company I was with. I thought I had better apply for the Ontario Disability Support Program. It took two years to get on. My friend luckily gave me a grace period. I kept track of all the money I owed him for rent and paid up when I received that back pay check. I went to see my family doctor, and he sent me for a variety of tests. They came back showing a problem with my lower back, degenerative disc disease, which turned in to arthritis. My knees were not bending properly. He sent me to a specialist, who figured out that I was having problems with my hips. Both were out of alignment. I had to have both hips replaced within six months of each other. It should have helped my walking. However, my range of motion in both my knees was not good. I then had my right knee replaced. I was supposed to get my left knee done, but I decided against it.
antianxiety medication and antidepressants. I was diagnosed with bipolar disorder and personality disorder. The medication keeps me on an even keel. I finally got my answers from my current doctor. I finally feel validated about what was going on with me.
I was diagnosed with colon cancer in 2017. The surgeon nicked my kidney during surgery, and I am now living with one kidney. I had side effects from the chemo. My speech was affected, and I have permanent nerve damage in both hands and feet. Where we were living, we ended up with bedbugs again, unless I had brought them with me from the last place. It increased my anxiety because I was constantly scratching myself, along with feeling so weak and sick on the chemo. Plus, although I had quit smoking for seven years, when I moved in with my cousin, I had the cravings. I have been smoking again for three years now.
I finally moved out of that building, leaving the bedbugs behind me, and am in a building with three apartments. I am with my partner. I am now working two online businesses. One is Partylite Candles and Home Décor Canada, and the other is LegalShield. I feel like I am alive again, doing what I love. I love helping people and giving people who are feeling full of darkness and despair a light toward hope. Keep going, do not quit! We are all worthy and deserve happiness. Some people do not know that mental illness feels like demons attacking our minds, bodies, In 2013, I was living in a bachelor apartment, and souls. There’s endless fighting within ourselves. and I had felt good for a couple of years. Then the darkness, loneliness, depression, and anxiety got We need to get more awareness and education out the best of me. I was living like a hoarder, and I there. Perhaps you who are reading this could call ended up having bedbugs. It was so horrible. I had that friend up and invite him or her for a coffee or taken a bunch of pills to kill myself. My only saving an outing of some sort. It will make the world of grace was I was sick to my stomach twice. I called difference. my son, and he told me to call 911. I did and am not sure how I made it downstairs. However, when the I would like to thank Evan for giving me the ambulance showed up, I told them it was for me. I opportunity to sharing my story! I hope it gives light met my current doctor that night and have stayed with him since. I am taking minimal amounts of and inspiration to someone reading this. Page 10
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How to ask for Disability Accomodations Michelle Steiner
When you have a disability, ensuring that you get accommodations is important. Accommodations provide a way for you to learn, work, and live your life with a disability. The Americans with Disabilities Act (ADA) mandates that a person with a disability can receive accommodations in school and on the job.
It’s also important to know what your strengths and weaknesses are. People with disabilities have things that they are good at and things that they struggle with as well. Another important thing is to know what strategies help compensate for your disability. I can remember my teachers giving me strategies such as extended test time, reading the test aloud, and using a
The ADA also requires that public settings be accessible for all using universal design. The beauty of universal design is that elevators, automatic doors, and curb cuts benefit all people, not just people with disabilities. The disability legislation has made it possible for A book lays open on a flat white surface, The backpeople with disabilities ground in a solid orange wall. Stas Knop to get services. However, the most important voices are those of people with disabilities advocating for themselves. Advocating may seem intimidating or scary at first. Many people fear rejection or being dismissed for having a disability. Advocacy is essential for the people with disabilities to get their needs meet.
piece of paper to help me visual track when reading. I used extended test time and a note taker when I went to college. I learned how to use resources to navigate the community, such as an elevator rather than an escalator. I am unable to drive because of my vision perception, but I can walk
or get a ride to where I need to go. Focusing on what I can do is more empowering than focusing on what I can’t.
After you know what your disability is, then you need to disclose your disability to your school or employer to receive accommodations. It is important to note that The first step to asking for disability accommodations is you can chose whom you wish to disclose your disability knowing what your disability is. I can remember being to. You may also need to provide documentation of diagnosed with a learning disability in kindergarten. My your disability. Disability disclosure has its advantages parents explained that I learned differently. As I grew, and disadvantages. One of the advantages of disclosing my understanding of my disability increased. I realized your disability is it lets others know what you need to how my disability affected me not only in academics, be successful. Disability disclosure also can explain why you may have been struggling with school or work. but in the community as well. Page 11
One of the disadvantages of disclosing one’s disability is that often people with disabilities are dismissed as having nothing wrong with them or that they are looking for the easy way to get out of doing work. People can’t see my learning disability and are shocked when they find out I have one. I have had people tell me that I couldn’t have a learning disability because I have accomplished so much or that I don’t look disabled. What many people don’t understand is that just because you can’t see my disability, it is there. I have also been able to accomplish many things because I have worked hard and found different ways to do things. If I don’t use accommodations, then I struggle with many tasks.
find new ways to do things and often have to relearn how to do something I could do previously. Asking for disability accommodations may not always be the easiest task, but it’s important to use strategies to help your disability. Disclosing your disability helps your employer or professor to know what your needs are. Having a student or employee with a disability also provides a richer environment of understanding. Many people have inaccurate perceptions of people with disabilities. Disclosing disabilities in a calm, positive manner shows what an asset you can be to a school or place of employment. Finally, the right accommodations can help you perform the task at hand and give you the
When you disclose your disability to a professor or satisfaction of a job well done. boss, it is best to talk privately. I remember introducing myself to new professors at the start of every semester. I explained that I had a learning disability and I would be using extended test time. It is important to explain your disability in simple, positive terms that pertain to the job or school duties. You may want to leave out how the disability impacts you outside of work or school. I also Are you a powerful try to emphasize what I can do rather than what I can’t women with a disability do. I may not be able to help someone with doing math, and a great story? but I can help with reading or other subjects. Disclosing your disability is a skill that gets easier with experience, the more you advocate for yourself. My parents advocated for me when I was a child, but I have to advocate for myself now. Practicing disclosing your disability with a friend or family member may be helpful as well. If you are not successful at a job or school with disability accommodations, don’t be discouraged. There are many other jobs and schools available. I have had many jobs that didn’t work out. I also struggled with many classes, despite accommodations. It does get better and greater opportunities are out there. You may also need different accommodations depending on the situation. I have to Page 12
We’d love to hear from you! Submit your story to us at magazine@goteamevan.com, and see our website, www.imaginetheworldasone.com, for submission guidelines!
Autism and Dance
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By Briony Mikell
Those on the autism spectrum seem to thrive when they have a constructive activity or outlet. I know that because as a woman with Asperger’s Syndrome, I can remember what I was like as a child. I grew up
Dancing was a way to appreciate art, and I got to experience how it inspires people. I remember my very first day attending Mayfair Academy. My instructor was strict, but also patient, kind, and encouraging. As I say this, I laugh because I remember
loving books and watching the way she watched me all Disney movies. I drew, throughout that day. After colored, and painted when the class was over, she pulled inspired to do it. I was me off to the side and said, “I An African American ballet dancer dressed in into the arts. I wanted to a leotard and tights rests her leg upon a ballet wish I had your legs.” That I experience the world and barre. Youngoldman remember word for word. What she was saying to me was that I had the tools share what I saw, felt, and to become a good ballet dancer and I was holding learned from those experiences. back, not using all my true potential. After that day, I As a girl, I wanted to be a ballerina after watching a did my best in each class, even when I didn’t feel like it. TV show called Angelina Ballerina. I even had a book titled Dancing in The Wings, and I read it a lot. That’s when my mother signed me up for ballet classes at Mayfair Academy. During that time, it was located at 1025 East Seventy-Ninth Street in Chicago. They are currently located at 8701 South Bennett Avenue in Chicago. The founder of Mayfair was Tommy Sutton. After he retired, his daughter Peggy Sutton took up the mantle and I remember her well. She loved dance, and she had a sense of pride when she saw African American girls like me show interest in dance. It was almost like I was a part of her family. I also remember my instructors and I still remember most of the performances I did at the end of the year showing what I learned.
Dance not only opened a door for me to explore my creativity and appreciation for the arts, but also taught me discipline, confidence, assertiveness, and how to listen for beat and rhythm. It also kept me active. Mayfair helped me become the person I am now, and I am grateful for the experience. Whatever you’re interested in, you can find an activity that is related to that interest. If you strengthen that interest, in time it can sometimes turn into a career. We don’t know what we are capable of until we put ourselves out there, asking ourselves what we want. What are we into? Once we answer those questions, we can do anything whether we have autism or not.
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“Inclusion of those Traveling with a Disability,” “My Journey is Like a Road!” and “My World!” Gafsa Garson Inclusion of those Traveling with a Disability I wish there were more humanity, compassion shown to those that have disabilities! To travel with a disability is extremely difficult and structures need to be put in place. I thus implore humanity, show empathy, respect towards disabled people and give them hope to travel abroad! Yet Unfortunately human beings that are healthy don’t realize that a disability can happen to them! The time shall come in the Almighty time when disabled people are not an inclusion and disabled people will not live in seclusion!
My World! My Journey is Like a Road! My journey in this world can be compared to a road! My past left me without a fixed abode! But Yet through all my obstacles in my life like a Rocky road! Hope, faith and pure inner determination I have! I shall not heed the troubles in my world! I rather focus on positive thoughts, affirmations and energy! And stay on the righteous path like a straight road!
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My world is filled with pain and sorrows But yet! I shall not give up on myself! I laugh, smile and take every day as it comes Because I know the day shall come when I shall become cold! So I share my love with everyone and share my passion for life! Because! I want to leave a legacy behind And I am grateful for my world! My heart is filled with love and blessings! As my heart can never be cruel and Cold!
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A Journey of Hope to Advocacy Forzana Nasir
Because many patients did not gain access to cannabis in 2018, Can Do seeks to highlight them, their conditions, and their needs. Patients need a medicine and clinicians they can trust. We want to help strengthen this connection and rebuild confidence because many patients report a lack of trust. Can Do does not promote private health care because we have a centralized health system. However, we understand it will take time for NHS access to become available. In the interim, we will inform patients about the most affordable ways of getting medical cannabis. We are launching a campaign very soon that will facilitate this further. We want to ensure there is enough evidence for patients to access After I found consultants had exhausted all treatment medical cannabis through the NHS. options available for me, I was sent home with a treatment plan of thirteen different medications to be We support long-term research, as well as research and taken four times a day, which medical cannabis helped development, to understand drug delivery methods and reduce to just three medications. I was bedbound for two develop products with advanced formulations to ensure years and had multiple symptoms like disease-related quality and bioavailability, or the amount of time it malnutrition. I was vomiting throughout the day. I had takes for a medication to become effective. We want to multiple subluxations in my ribs and dislocations of show the real efficacy of cannabis as a medicine, help my shoulder, ankles, and fingers. I had no real quality patients have access to gold standard products that do of life until I added cannabis into my treatment plan, not degrade, and debunk some of the existing marketing which was my only option because I could vaporize it. myths. I noticed very few side effects apart from tachycardia , a rapid heartbreat, while finding the correct dose. It has We have a multi-collaborative approach to ensuring helped with deprescribing, or weaning off medication, patients have access to a therapeutic treatment and has increased my appetite and reduced vomiting. It plan that is personalized and to support the huge is an effective chronic pain reliever. However, for acute investment patients initially make to improve their pain from dislocations and subluxations, I still take a health outcomes. We are providing a way for patients to voice concerns about their experience without the dose of opiates. fear of it impacting their treatment and continuing care. Some patients have ceased opiate use with the addition We constantly learn and collaborate with doctors and of medical cannabis. I was treated by a fantastic doctor health care professionals globally. Patients’ feedback and who is the pioneer of medical cannabis in the UK. He experiences are important, and I want to relay this to wrote the first prescription in December 2018 at the clinicians, pharmacists, the government, and producers. medical cannabis clinic in Manchester. Products have Patients need a range of products and a variety of ways been available legally to patients ever since. I am the in which the medicine can be administered. Some longest continuing prescribed patient in the UK, and I patients may consider over-the-counter products. We wanted to use my experience to help others, so I founded want to ensure they are safe and ensure we know where to go. People need real change that benefits them and Can Do. happens as soon as possible. Patient advocacy and research has become a passion since I was diagnosed with Ehlers-Danlos syndrome (EDS), a hereditary musculoskeletal condition, and its associated comorbidities. My diagnostic journey led to retraining so I could use my lived experience to help others, to bridge gaps between clinicians and patients, and to restore trust and improve patient experience. Originally, I studied human resources and business management, but I had to retrain so I could help other people like me. I am currently a second year Health Science BSc student, and I am helping people understand medical information.
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Profit vs. Accessibility Richard Acree
A row of coins rests upon another pile of coins. There are bars at the top of the picture and circles through which blurred light comes in. Lines like ones seen on a stock chart go down then up,. Dilok Klaisataporn
If you own or operate an entity that is profitable chose not to improve ADA compliance, you could have but not fully compliant with the Americans with a problem. Disabilities Act (ADA), you could have a problem. All of these scenarios are possible due to the If your profitable entity chooses to use profits for requirement for owners and operators of entities employee bonuses or shareholder buy backs of stock, to install and maintain ADA-compliant policies, instead of improving ADA compliance, you could have procedures, and facilities at their entities, regardless a problem. of when the entity was established or the facilities were built. If your profitable entity chooses to use profits or a loan to buy another entity and then did not improve Newly designed and constructed facilities must the ADA compliance at the acquired entity, you could comply with the 2010 ADA Standards, and have a problem. alterations to existing facilities must comply to the maximum extent feasible. But here comes the If you represent a bank and your bank loaned money catch. For existing facilities that are not undergoing to an entity and made a profit off the loan, while the alterations (regardless of the age of the facility), entity chose not to improve ADA compliance at the the owners, operators, and tenants still have an entity, you could have a problem. obligation to remove barriers to ADA compliance to the maximum extent that is readily achievable. If you are an investor and bought stock in an entity And if your entity is profitable, it is hard to deny that and made a profit off your investment, while the entity modifications are readily achievable. There are some
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exceptions that can escape this requirement, such as historical buildings, but that is for only a very small percentage of the buildings that exist.
sites in question to any parent corporation or entity;
Public accommodations are required to remove barriers only when it is “readily achievable” to do so. Readily achievable means easily accomplishable and able to be carried out without much difficulty or expense.
5) If applicable, the type of operation or operations of any parent corporation or entity, including the composition, structure, and functions of the workforce of the parent corporation or entity.
The key words in the requirements above are readily achievable. The ADA Title III Technical Assistance Manual, Part III-4.4200 Readily Achievable Barrier Removal states:
How does the readily achievable standard relate to other standards in the ADA? The ADA establishes different standards for existing facilities and new construction. In existing facilities, where retrofitting may be expensive, the requirement to provide access is less stringent than it is in new construction and alterations, where accessibility can be incorporated in the initial stages of design and construction without a significant increase in cost. This standard also requires a lesser degree of effort on the part of a public accommodation than the “undue burden” limitation on the auxiliary aids requirements of the ADA. In that sense, it can be characterized as a lower standard. The readily achievable standard is also less demanding than the “undue hardship” standard in Title I, which limits the obligation to make reasonable accommodation in employment.
How much difficulty or expense is too much? Determining if barrier removal is readily achievable is necessarily a case-by-case judgment. Factors to consider include: 1) The nature and cost of the action;
2) The overall financial resources of the site or sites involved; the number of persons employed at the site; the effect on expenses and resources; legitimate safety requirements necessary for safe operation, including crime prevention measures; or any other impact of the action on the operation of the site; 3) The geographic separateness, and the administrative or fiscal relationship of the site or
4) If applicable, the overall financial resources of any parent corporation or entity; the overall size of the parent corporation or entity with respect to the number of its employees; the number, type, and location of its facilities; and
If the public accommodation is a facility that is owned or operated by a parent entity that conducts operations at many different sites, the public accommodation must consider the resources of both the local facility and the parent entity to determine if removal of a particular barrier is readily achievable. The administrative and fiscal relationship between the local facility and the parent entity must also be considered in evaluating what resources are available for any particular act of barrier removal.
SUMMARY If the entity is profitable, and has been profitable for a while, it is hard to deny that improvements for ADA accessibility are not readily achievable. The courts tend to favor the disabled if the issue of readily achievable is not clear. If in doubt and your entity is profitable, choose accessibility.
…………………………………………………………………………… …………………………………………………………………………… If you observe an entity or facility that is not ADA compliant and you would like to know how to proceed, please see the article “What To Do When A Building Is Not ADA Compliant or Accessible.” ADA Inspections Nationwide, LLC, offers ADA/ ABA/FHA accessibility compliance inspections for buildings and facilities, as applicable to the different laws, and expert witness services with respect to ADA/ABA/FHA laws for building owners, tenants and managers. Also, ADAIN offers consulting for home modifications as a CAPS consultant for people wishing to age in place in their homes. For a complete list of services please see “ADAIN Services.”
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Casting Call for Awar
Jillian Bl
Recently, I was scrolling through the list of movies on Netflix, and I stumbled across The Prom. Earlier that day, my dad and mom encouraged me to watch it because I love musicals, so I did. To me, this film had all of the makings of a great movie except for one glaring omission; there were no people with physical disabilities represented in this movie, except one character who portrayed Franklin Delano Roosevelt in a play.
would never make it on her own merit. Although the actress who plays Becky has Down syndrome in real life, her character is still totally onedimensional.
Artie is yet another example of Glee’s onedimensional characters. Artie, who’s played by a nondisabled person, is in a wheelchair on the Why is it so hard for directors to appropriately show. The one episode A film reel with a red roll of film c and correctly represent people with disabilities that stands out in my light background. Denise Jans in their work? In my estimation, this comes down head is called “Wheels,” to possibly being uneducated. It’s also due to fear where, at first, Artie is not able to go on a school field of not accurately portraying disabled people. But trip with Glee Club. people with disabilities are humans too. On the show they were trying to get a wheelchairTo solve this problem, directors could have more accessible bus for him to go to a singing competition. consultations with people with disabilities so they Some of the characters were sympathetic to his can accurately depict disabled people without dilemma, but some of them minimized it and just infantilizing them. Unfortunately, people with asked— and I quote—”Why can’t his dad drive disabilities are treated as much more innocent, him, as he does everywhere?” That repeated over younger, or weaker in both real life and in the movies. and over in my head like a movie reel because I had Examples of movies with characters like this include similar experiences in school. My dad had to drive Rain Man, Forest Gump, and I Am Sam. If you’ve me from Abbotsford, Canada, to Vancouver to see a ever seen or heard an adult disabled person being play in the seventh grade. Unfortunately, people can spoken to or treated like a child, you understand be shortsighted and not inclusive, even if they don’t what I mean. mean to be. This is unfortunate because The Prom is a show advocating diversity and acceptance. If one marginalized group is excluded, does that really advocate for acceptance?
The Way Disabled People Are Portrayed Is One of the most offensive parts of “Wheels” was Appalling when the entire able-bodied cast got wheelchairs When people with disabilities are portrayed, they to use as props and did disabled dance as a way to are often depicted as one-dimensional characters. placate Artie. Another word for this is appropriation. Ryan Murphy’s other famous show, Glee, had a lot of Glee is not the only show in which disabilities are one-dimensional disabled characters in it. Becky is a portrayed negatively. Throughout my research, I cheerleader with Down syndrome whose disability have discovered how disabilities can be amplified to is used to make other able-bodied characters feel make characters look scarier—for example, Darth better about themselves. Teachers intervene to Vader or Captain Hook. As for Captain Hook, literally, make sure that she’s on the cheerleading team “for his name speaks for himself. When you think of the right reasons” because it’s implied that she Captain Hook, what do you picture? In terms of Page 18
IWO Magazine
reness and Inclusion
leackley
Darth Vader, I think Obi-Wan Kenobi nailed his description when he said, “he’s more machine now than man, twisted and evil.” Darth Vader’s disability unequivocally makes him evil.
There are several other examples of the deplorable depictions of people with disabilities in movies—case in coming out of it is visible against a point, Forrest Gump. Forrest Gump has been able to lead an enriched life because of his disability. Forrest Gump’s character is trumpeted as an inspirational character, and we are urged to feel sorry for him throughout the movie. The infamous scene of “run, Forrest, run,” when his girlfriend Jenny urges him to run away from the bullies so hard that his braces on his legs break, is ridiculous. In real life, that would never happen, and it would leave nasty marks if it ever did. Also, how can a disabled person suddenly become nondisabled?
disabilities—for example, Kevin McCale in Glee. Able-bodied people play ninety-five percent of disabled characters on television.
We all know the rapper Drake, but on the popular show Degrassi, he played the character Jimmy Brooks who was injured in a school shooting which left him paralyzed from the waist down. Again, and I feel like I’m beating my head against the wall, Drake is not disabled.
I’ve also been racking my brain, and I cannot come up with a single actor or actress with a disability that is as well-known as Jennifer Aniston or Angelina Jolie. Please correct me if I’m wrong. Sometimes I feel like society just ignores me altogether. I would like to change this desperately. I’m still wrestling with a way to change this. As the disabled community, we need to become our own activists and speak for those who cannot speak for themselves. Sadly, it comes down to four things: money, laziness, lack of awareness, and infantilization. We need to sit down at the communal table and promote access for all. Promoting Accessibility through Awareness
Let’s work together! Here are a few good places to start.
Unfortunately, Forrest Gump wasn’t blessed with the highest IQ, but he was able to be successful at things that most people could only dream of and that • Sensitivity readers should be used to make sure that people with disabilities are being portrayed require a lot of training. One of the central plotlines accurately and not infantilized in scripts. of Forrest Gump is his and Jenny’s relationship. I find it fascinating that Jenny could be so ignorant of • People with disabilities should get priority for roles of disabled people. Forrest’s feelings. I also find it very interesting that • Budgets should include creating equal access for she blatantly uses him throughout the movie. all on sets. People with Disabilities are often Overlooked • Grants and scholarships should be given to for Parts—Even of Disabled Characters! disabled directors and screenwriters. • There should be no more rampant stereotypes After extensive research and watching movies and of people with disabilities and disability TV shows, I’ve come to the startling conclusion that appropriation in film, and no more discrimination there isn’t enough representation of people with against people with disabilities. disabilities in the film industry. Even characters that have disabilities are not played by people with
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Agriculture and Success in Zimbawbe Stanley Mushaninga
Lazarus, a dark skinned man wearing a red, white and black striped shirt and black pants stands with his walker on a dirt road. A few structures are visible in the background behind him. Lazarus Zenda is a forty-four-year-old man with a spinal cord injury living in a rural area of Mhondoro in Mashonaland West province of Zimbabwe. He is married and has three children. He had a lifechanging accident that resulted in him using a walker. The injury left him with some residual movement in his lower limbs, and this has greatly improved his independence in daily living skills and mobility. However, Lazarus has beaten all odds and has set up a thriving micro-agricultural project that has helped him to be self-sufficient and also be a role model of people with disabilities in his community.
digging and hurt his back. He later spent more than three months in the hospital seeing various specialists. He was discharged in January the following year. He benefited from physical therapy at home from the local rehabilitation department and has since regained some movement in his legs. He currently uses a walker, and it also supports him as he works in his garden. At home, things did not go well for him as he struggled to move from being a sole provider of the family to being a person dependent on others for daily support. His wife and children struggled a lot to provide for the family. The local rehabilitation department then introduced him to a local developmental partner known as Ruvarashe The accident and first contact with Trust, which pledged to support his wishes of rehabilitation personnel farming. The organization bought him a small In October 2010, Lazarus fell down a well he was generator, pump, and seeds to help him commence
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a micro-income-generating project of horticulture and animal rearing.
Results of assistance
Lazarus is now running a very successful horticultural project that is providing fresh produce for his community. He has since increased the size of his garden from a mere quarter of an acre to almost four fifths of an acre. Proceeds from the project have also enabled him to fence the entire plot and enhance the security of his produce. Lazarus has achieved his lifelong passion of utilizing his farming skills to provide for his family. His gardening project provided income for his children’s fees and for other monetary needs of his family. The farm uses mostly organic fertilizer generated from poultry and goats. Organic fertilizer has also been cheaper for him and Lazarus, a dark skinned man wearing a shirt, pants facilitates project sustainability. and jacket, stands with his walker in a field of crops. Lazarus mainly uses s manual method to fetch water from the well, as access to fuel is difficult and the generator is no longer functioning fully. His family Challenges faced members assist with fetching water, irrigating the Lazarus depends on a manual system to irrigate his plants, and taking care of domestic animals. He is crops from a well which is about fifteen meters deep. making use of the experience he gained from working The system is very tiresome for him and his family. in commercial farms to make the farming venture The well occasionally dries up, and this impacts more productive. Currently he has over fifteen negatively on his crop and animal output. He also chickens, thirteen guinea fowls, twenty turkeys, and faces challenges in transportation of his produce fifteen goats. He is expecting three tonnes of maize to the preferred markets as his ox-drawn cart has and over forty buckets of sweet potatoes and three limited capacity to transport huge quantities over buckets of beans. long distances.
Impact of assistance
Lazarus is now a role model in his community because of his endurance and hunger for success. He has changed the status quo of people with disabilities in the area through challenging negative stereotypical behaviors that have been apparent in the community for so long. The project has moved him from being dependent on handouts from well-wishers to a well-respected member of the community who is contributing to his family and community development. Many people now realize the critical role of communities in the rehabilitation of people with disabilities. The local rehabilitation department now engages him in advocacy and awareness-raising activities in the community.
Ambitions/ Aspirations
Lazarus aspires to be a leading supplier of fresh agricultural inputs in the area and the country at large. He hopes to get a borehole drilled and have irrigation systems installed so as to have a sustainable water supply and an opportunity to increase the size of his land under irrigation. He hopes that his business continues to grow so that he can afford a vehicle to help him transport his produce to markets in larger cities where his produce can fetch more money. Lazarus also hopes to employ youths in his area and empower them with farming skills he has gained.
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Stephanie Woodward: The Power of Female Representation in the Disability Rights Movement Molly Wiesman There is a well-known image from a few years ago of Stephanie Woodward where she, in her wheelchair, is being removed from the US Capital by security guards after protesting cuts to Medicaid outside of then-Senate Leader Mitch McConnell’s office.
during college. She was struck by how much more accessible Ireland was than the US, particularly its bus system. She later learned that Dublin was so accessible because, in part, many people in the Irish government had been soldiers who endured injuries in the conflict between Stephanie Woodward is a Ireland and Northern Ireland. prominent activist in the disability During her time in Ireland, she community, and one with a started to investigate internships multifaceted life. Woodward is a back in the US that would allow lawyer, and one of the founders her to learn more about the of the Disability EmpowHer disability community. Woodward Network, an organization interned at an independent dedicated to inspiring leadership living center when she was Woodward, a caucasian woman, nineteen and was inspired by the in girls and women with sits in a pink wheelchair. Her arms people she saw with disabilities disabilities. Her activism began are being restrained by two men is at an early age. She was inspired yellow vests. She wears a black t shirt making important decisions to go into law when she was still with writing on it black pants and while taking care of their own a young girl due to an incident sunglasses. A few other people look needs, and it taught her not to involving the room where her on as she is restrained by security be apologetic for who she was. What would ultimately cement music class was held at her school. officers. Jordan Uhl her decision to pursue law was There was a ramp leading up to the offer of an internship in Senator Tom Harkin’s the room, and her teacher observed that it was office through the American Association of People “very dangerous” for her to be on the ramp because with Disabilities in 2009. During that time, she she could hurt the other students if her wheelchair became increasingly aware of the issues affecting slid down the ramp. When Woodward told her the disability community, and she decided to apply dad this, he was livid. He went to her school the to law school. next day to talk to the principal, but when told the principal was busy, he insisted he would “call the As she began her career as a lawyer, Woodward ADA.” Stephanie didn’t know what that meant, so became increasingly involved with the disability her father explained the ADA, telling her to “think rights movement. Woodward observed a lack of about it like a bunch of lawyers in wheelchairs who female representation in leadership roles in the don’t take no shit.” disability community. She felt that although the Woodward would more clearly see the lack of accessibility for people with disabilities in the United States when she studied abroad in Ireland Page 22
importance of the role of women in the disability community was often overlooked, as a woman with a disability she still felt empowered. “I don’t have to apoligize. I don’t have to try to be nondisabled.
IWO Magazine
I don’t have to try to be a man, I can be a disabled woman and I can kick ass,” she states. She didn’t have disabled women role models until adulthood: “The disability community and the disability rights movement was a white man’s game for so long, and we forget not only the woman with physical disabilities who were marching . . . but other women with and without disabilities who were serving as attendants, who were helping to make sure they could get out there because they got dressed that morning, they got to eat, and it was women helping them.” She feels that more respect needs to be paid to the many women who serve as attendants and caregivers to those with disabilities.
community,” she says. After doing her research, she found that there was a lack of statistical data about women with disabilities in leadership positions, leading her to also investigate high school graduation and employment rates for people with disabilities. She believes that giving girls with disabilities leadership skills from a young age will be beneficial to them, saying, “We can’t help women with disabilities become leaders if we don’t start when they’re much younger, because by the time you’re eighteen or twenty, you may have already started to believe those internalized, ableists things that people put on you, that you’re not capable, that you can’t do things.” She adds that statistics show that students are more likely to graduate high school She observes that when a relationship Yoshiko Dart, wife with a mentor lasts of Justin Dart, was at least one year often overlooked as a and that girls with woman who played an disabilities are more important role in the in need of role models passage of the ADA. than boys with Justin Dart served as disabilities because the chairperson for “there’s less visibility the National Council of successful disabled on Disability, and women and there organized a crossare more socially country bus tour sanctioned roles for to gather stories disabled women.” from people with Woodward observes disabilities that would that chances of ultimately influence employment increase passage of the ADA. Aove the images of two girls, white text appears against a when students Stephanie explains that Yoshiko traveled pink circle. The text reads "letter from a role model." Below graduate high school, with Dart to every state this appears two picture of girls, one picture on the left, the and they go up even in the U.S. to gather other on the right. Below the first picture it says Brayden, 9, higher for college testimony from people 4th grade, loves art. Brayden appears wearing a gray hat graduates. She also with disabilities, yet with a greeting card open and propped up in front of her. In makes the important Yoshiko’s role in the the card is a drawing of a hedgehog holding a wand and blow- observation that the movement is often ing bubbles. On the right is a picture of a girl wearing a blue role mentors play sweater using her mouth to hold a pen as she writes a letter. in the lives of young overlooked. women allows them The lack of representation of female leadership in to see greater opportunities for themselves in their the disability rights movement led Woodward, along futures. with her friend and fellow disability rights activist Leah Smith, to found the Disability EmpowHer One of the mentorship programs for young women Network (DEN), after seeing a lack of female offered by DEN is a week-long camping experience leaders in nonprofit disability organizations. “I was that gives girls with disabilities ages thirteen to predominantly mentored by men in the disability seventeen the opportunity to learn about disaster
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preparedness as well as leadership skills. DEN does this through facilitating a skills-building camp, a year-long project concerning disaster preparedness and continuing support for the girls going forward. Another program offered by DEN is a letter from a role model for girls ages eight to eighteen where women with disabilities offer life advice to girls with disabilities.
The cuts to Medicaid that Woodward protested outside of Mitch McConnell’s office in 2017 would have more than likely forced people living with disabilities into nursing homes, when because of their existing Medicaid coverage, they were able to receive care in their homes and remain in their communities. Woodward observes that institutional bias for people with disabilities still exists, even though it’s been found to be less expensive for disabled people to live in communities. She attributes some of the cause of institutional bias to the Industrial Revolution, because prior to the then all members of a family, including those with disabilities, had jobs, making it possible for families to support them. With the onset of the Industrial Revolution, there were no longer jobs for those with disabilities, resulting in them being placed in institutions. She believes continuing deinstitutionalization will need to be influenced by stories of the success of people with disabilities living independently in the community with the support of attendant services.
now sees that they’re not just dangerous because of COVID—they’re dangerous because of neglect, because of abuse, because of lack of autonomy, because of loss of independence. Like I, as a disabled person, can still be independent in the community even if I have attendant services. I can’t be when you lock me behind closed doors.”
Woodward credits acceptance for marginalized groups to positive portrayals of other marginalized communities, such as the LGBTQIA community and to the influence of the media. She credits shows like Will & Grace with cultivating more acceptance of this marginalized group. Woodward wishes there were more positive portrayals of people with disabilities in the media, such as the show Speechless, which ran on ABC from 2016 to 2019 featuring as its main character JJ, a teenager with cerebral palsy who was nonverbal and had a personal attendant. Woodward believes shows such as Speechless had a positive influence on people’s opinions about people with disabilities living in the community with the aid of attendants.
Woodward’s work as a member of the disability community revolving around women and girls has instilled the belief in a younger generation of girls with disabilities that they, too, can fight unapologetically for what they believe in. The role of women in the disability rights movement is often unacknowledged, yet Woodward is a perfect example of female power in the movement. Her work has been the inspiration for many girls and women to take pride in their disability identity.
Woodward says there is a continuing institutional bias to place people with disabilities in nursing homes because Medicaid is mandated to pay for nursing home facilities, but it is only optional for it For more information about the to pay for community-based services. “I’m hoping EmpowHer Network, please visit that COVID has at least exposed to some people www.disabilityempowhernetwork.org the danger of nursing facilities, that the disability community has been, not just been preaching about, but literally shouting at the top of our lungs about for the past thirty years.” She also observes that she doesn’t think people, particularly legislators, understand the harm of institutionalized settings until someone close to them suffers from the negative consequences of being in one. Speaking of institutionalized settings, she states “I’m hoping that the rest of the world Page 24
Disability
IWO Magazine
Women’s History Month: A Disability Perspective Nicole LeBlanc
An illustration of six women in a row. The women are illustrated as being of different races. They are wearing orange, pink and brown shirts. Atlas Studio
As we celebrated Women’s History Month and Developmental Disability Awareness Month in March, we recognized the struggles women continue to face in our society under systems of oppression. The COVID-19 pandemic has laid bare the social and economic injustices that women, especially those with disabilities, face. The COVID pandemic has driven millions of women, especially mothers, out of the workforce due to caretaking responsibilities and layoffs. As of last December, American women lost 156,000 jobs. That is equal to 100% of jobs lost in that month alone. Since the start of the pandemic 2.5 million women left the labor market compared to 1.8 million men. As a society, we must do better to ensure our workforce can accommodate the unique needs of women in general and women with disabilities.
The COVID-19 pandemic offers a perfect opportunity to reset the social contract for all workers, especially women with disabilities and single parents. One of the biggest disparities women face during COVID and beyond is the fact that they often work in femaledominated industries like hospitality, food services, and home care. On top of that, they often have to balance family caretaking responsibilities while also maintaining households. They deal with barriers like poor access to childcare, and COVID has necessitated them taking a more active role in ensuring kids are participating in
remote schooling. Our society can and must do better at supporting women in the workforce and balancing the cost of unpaid childcare and unpaid caregiving of seniors and adults with disabilities. As we begin to dream of a vision for a post-pandemic world, I hope for a launch of an aggressive economic policy agenda to support women and women with disabilities. I hope the agenda enables them to get ahead in today’s world while being accommodating to the challenges of parenting and maintaining a household. Some ideas for improving the lives of women include, but are not limited to, the following:
1women We should expand childcare support for all so that can continue to stay in the workforce 2flexible Employers need to embrace a shorter work-week and scheduling, which is something that can benefit
us all. In many countries, full time is considered thirty to thirty-four hours instead of forty. Some countries have shortened the workday and embraced a four-day workweek. Doing this, especially during a pandemic, can enable women to meet daily obligations, and it can Page 25
protect our mental health from pandemic burnout long term.
3betterPaytimeall women the same wage as men. There is no for equal pay than the present.
11 We must embrace intersectionality in all that we do because no movement’s issues are single rights issues. They are all connected one way or another. LEAD ON!
4pay Change funding policies and make an investment to direct support professionals, and home care staff a
livable wage. Caregiving is a job that must be recognized and fairly compensated.
5one Adopt paid leave and sick days for all workers. No should have to worry about income loss due to illness or illness of a family member.
6backAdopt universal basic income so that parents can go to the days when one person worked full time and other worked part time.
7nationwide. Outlaw salary
history in the hiring process
8 Pass the Equal Rights Amendment. 9waysIntotheaddress disability world, study and develop effective the gender bias in the autism community.
Autism is often thought of as a boy thing and girls tend to mask by “passing,” or acting as normal as they can. That is, until social demands of daily living become too much, and they hit rock bottom or have a crisis like I did. I was at Job Corps for one and a half years during my twenties where I developed anxiety and trauma and became more aware of my differences.
10 We need more women on the frontlines when it comes to managing crises like the COVID-19 pandemic, given that women leaders have dealt with COVID better globally. Page 26
What mountains have you climbed? Tell us by submitting your story to IWO at magazine@goteamevan.com
IWO Magazine
Fitting Furniture for People with Disabilties Andrew Morgan
I write from a business point of view but also from Getting involved with mobility furniture came the perspective of somebody with a very personal about by pure chance. Some would call it fate. interest in how arthritis can affect our lives. Whatever the explanation, the minute I walked through the proverbial door, I have never found Some of my earliest memories are of my gran being myself wanting to leave. I have found my calling. You almost completely incapacitated by rheumatoid hear a lot about job satisfaction being rare these days. arthritis. I’m forty now so these memories go back I just say you must be in the wrong job. When you a fair way, but they’ve stuck with me because of find something you’re passionate about, something the cruel pain it caused her. Of course, it isn’t just that you’re good at, it’s a joy to go to work. our grans and grandads that can be affected by this terrible condition. People of any age can have it. That joy comes from making a significant difference in people’s lives. How? Back in 2010, my partner People’s conditions don’t define who are they are. and I set up HWB Mobility, a provider of high quality, There is so much more to a person than the health British-made riser recliners and adjustable beds. problems he or she faces. I have met some amazing people while being in the mobility furniture industry, Right up until the pandemic hit, we would visit people that have skydived at eighty, people that have people in their own homes in South Wales and met the queen, people that continue to work despite the West, highlighting the potential benefits our their ailments, and people that devote themselves to products could give them. all sorts of wonderful charities and causes. Since Coronavirus, we have had a website developed Ninety percent of my work has consisted of my just to bring our products to the mass market. We now being enthralled by my clients’ tales of years gone supply the same high-quality products to people by and of the way things have changed for them over and care homes throughout mainland Britain, and the years. no one sells our products for less. Our website is here: https://hwbmobility.co.uk/. Just because you have arthritis, or any other debilitating condition, doesn’t mean you stop having Of course, it isn’t just people affected by rheumatoid a life. You find ways to adapt. People with arthritis, arthritis that we hear from. There’s a whole host of stroke survivors, people with multiple sclerosis and conditions that our products can help with, from the elderly and frail are still people. More people poor circulation to the more common osteoarthritis, should realize this. edema (build-up of fluid in the body, most common
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A rerclining bed against a gray wall with a brown bed frame comprised of oval shapews at the foot and head of the bed. On the frame are two reclining matresses with white sheets on them and brown pillows. The remotes for the mattresses lay on top of them. There is a rug at the foot of the bed. Light is visible coming in through the windows of the room. in the lower limbs), general frailty, and lots more besides.
for as long as necessary. Always make sure you get up and move around for at least ten minutes every hour, regardless of how comfortable you feel. This helps with circulation.
So how do our products actually help? You undoubtedly have heard of riser recliners and adjustable beds, but how many of the benefits are That brings me on to another benefit of one of these you actually aware of? chairs. If you struggle to get to your feet unaided, at the touch of a button, your chair will fully support Riser recliners can help in so many ways. What’s you in getting to your feet until you’re ready to move one of the things your doctor would tell you if you off. Some people will have their walkers at the ready were feeling a bit under the weather? “Go home for that extra bit of support when moving around and put your feet up!” Footstools are fine . . . for a the house. while. What they don’t do is support your whole leg or raise it to the exact height that you need it to be. It’s often the families that come to us, enquiring Before long, the backs of your legs and knees are about the benefits of riser recliners. It gives them aching due to the lack of support. The leg rest of a peace of mind, particularly if their relatives are riser recliner chair will fully support your entire leg prone to falls, knowing that the rise function will Page 28
IWO Magazine
help to steady them as they get to their feet.
People with breathing problems find a great deal of benefit from being able to raise the head end of We are often asked, “Can you sleep in these chairs?” their bed during the night. Unlike pillows, the angle The short answer is yes. With that comes a huge of your bed won’t alter until you press the button. caveat though. We don’t recommend it for prolonged periods of time, again, regardless of how comfortable Some clients had a need for four pillows before the you are. Despite the chair being able to fully recline arrival of their adjustable beds. Finding that you’ve into a near-lying position, we would always advise somehow managed to wedge a pillow between your that bed is the best possible place for a good night’s legs, one over your face and one on the windowsill sleep and preferably, in one of our glorious, high- while waking to find your head is supported by the quality, British-made adjustable beds. corner of the one remaining one will be a thing of the past. An adjustable bed is a wonderful solution for people that have difficulty in raising their upper body when Nowadays there are all sorts of added extras that lying down. It takes away all the strain when you’re you can pop in your basket when shopping for an not easily able to do it yourself. adjustable bed or riser recliner, things like heat and massage, USB charging ports, reading lamps, underYour mattress is the bed motion lighting, most important part of cot sides, grab rails your bed, particularly and more. so when it has to move up and down on an Gone are the days of adjustable frame. So the noisy massage many people have motors of a Craftmatic. come to us to say I can say that now as they’ve gotten an they’re no longer in adjustable bed, but the business. Whenever I mattress is no longer used to go to a client’s fit for the purpose. A matching cream colored 2-seater couch and recliner house that already had Every mattress that we chair with a design of leaves on it. The brand is Westbury a Craftmatic bed, I’d provide is specific to Riser. joke and ask whether it came with free ear defenders! the base it sits upon and will do the job perfectly. Raising the head end of the bed while you’re in it so that your head is higher than your stomach can help alleviate conditions such as reflux by simply using gravity to your advantage and keeping acid down in the gut where it belongs.
Riser recliners and adjustable beds were what we focused on in pre-pandemic times. Since then, we’ve added profiling beds, pressure care mattresses and specialist seating to our offerings too.
Profiling beds differ from adjustable beds in that Raising your legs while you’re lying down to be they are designed more to aid the caregiver as well above the position of your heart can help improve as the person using it. circulation and reduce swelling in the lower legs They can be raised up to waist height in order to caused by edema. save the caregiver having to bend and tend. They
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often come with side rails to prevent falls and have a We follow the news and see all the cuts that are range of standard safety features. being made. We read the stories about the hardship that people face, now more than ever. Pressure care mattresses are simply high-grade medical mattresses aimed at preventing bed We understand, we care, and we listen because we sores. There are many different levels of pressure know what it’s like. I often think about my gran care depending on the risk posed to the person ly- who suffered so much, and the countless number ing on it. They are more geared toward people that of clients we have that struggle on a daily basis to spend prolonged periods in bed. do what they once took for granted. The world isn’t going to change because of what we do. If we can Finally, our specialist seating category consists of make a difference in your life though, we’d love to riser recliners with pressure care quality seats. hear from you. Porter chairs are extremely comfortable chairs with heavy duty castors and a push handle, enabling caregivers to maneuver the people in them with ease. We also offer a range of all of these products with a bariatric version for larger-sized individuals. While none of these products are going to cure your disability, they can certainly ensure you are as comfortable as possible while using them, and they have real practical elements too that I’ve already mentioned. This is far from an exhaustive list, just some of the main benefits that occurred to me as I was writing.
People are sometimes reluctant to embrace our products for the perfectly understandable fear of becoming too reliant on them. We understand this and have walked away from many a sale if we think somebody could do without them. For when people really need us though, we’re a lifeline, and we strongly believe you should not pay dearly for something that we deem is an essential item. Clearly, all of our products are going to cost more than your typical armchairs and divan beds just because of the sheer craftsmanship that goes into making them.
We don’t share the widely held view that people with disabilities are awash with money. Page 30