An interview with James Odato, author of This Brain had a Mouth, a new book about “Mouth Magazine” founder Lucy
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In light of the recent events in Uvalde, and after seeing a post on Instagram on the subject, I was compelled to write my thoughts about it, because it made me really think.
Imagine being an amputee, running for your life, trying to escape from a gunman?
What about the blind? What if the blind had a guide dog and the guide dog got shot?
What if a venue is no where near wheelchair accessible?
Do we need to manufacture bulletproof wheelchairs nowadays?
When I was in high school in Bermuda, we had lockdowns in the midst of school fights, but according to my research, Bermuda has nothing in place like active shooter drills. As a wheelchair user, I was given a Personal Emergency Evacuation Plan (P.E.E.P) in University for fire drills in the UK. I’ve also had an evacuation plan while on a job placement in England, which was successful. https://fb.watch/dfEbtVVhVo/
It looks like America has something in place, but is this effective? Everyone’s right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of
a court following his conviction of a crime for which the penalty is provided by law.
Neglecting to make reasonable adjustments goes against ones’ ‘right to life’. Not much seems to be in place by way of safety legislation. However, as an alternative, there is martial arts and carrying a gun for self-defense.
Does this help? Don’t our lives matter too?
Disability Martial Arts Association: http://www. disabilitymartialartsassociation.co.uk/introducing_you_to_the_disabilit.htm
Wheelchair Self-Defence: https://www.combat-academy.co.uk/wheelchair-self-defence/
Human Rights Act 1998: https://www.equalityhumanrights.com/en/human-rights-act/article-2-right-life#:~:text=1.,penalty%20is%20provided%20by%20law.
https://www.whitehouse.gov/briefing-room/ presidential-actions/2022/05/25/executive-order-on-advancing-effective-accountable-policing-and-criminal-justice-practices-to-enhance-public-trust-and-public-safety/
https://www.gov.uk/government/news/uks-strictgun-laws-strengthened-with-new-medical-arrangements
https://www.gov.uk/reasonable-force-against-intruders
https://www.wheelpower.org.uk/sports/ karate?gclid=Cj0KCQjw-daUBhCIARIsALbkjSYPWF TZb2CUmXRiwQx6fj62zYLEdMVGMUDvn7reTNde WG1cCgANbyUaAiClEALw_wcB
Traveling is the preferred activity for my husband and me. We love to take trips and go on adventures. I love to take pictures of our journeys. Most people love seeing our photos and ask how we always find places to visit. Despite having a disability and a limited budget, we have been able to travel to amazing destinations and make memories.
The first step in traveling with a disability is to determine your budget and where you want to travel. My husband and I will talk about places that we want to visit and how much money we have to spend. I will then begin to look for a hotel and places to visit that are in our price range. I try to get a hotel that has perks such as a fitness center, pool, free breakfast, and a complimentary cocktail hour. I also try to find a place to stay that is close to the activities we plan on doing.
The second step to traveling with a disability is to see what types of accommodations are available on the trip. The Americans with Disabilities Act (ADA) mandates that accommodations be made for people with disabilities. Accommodations will vary from establishment to establishment. Some places are exempt from compliance if it would affect the structure of a historic building. The accommodations I look for are having a working elevator or stairs. I am unable to use an escalator due to my visual
A statue in front of a brick path surrounded by flowers. There is a shamrock shape in the bricks. Photo by Michelle Steiner
perception. I have seen signage indicating that the elevator is only for people with physical disabilities who use wheelchairs or for people pushing strollers. Many people don’t realize that some disabilities you can’t see.
Finding an elevator or stairs is important when I need to take a subway. I can remember the first time I traveled with my husband and struggled to find an elevator. It can be frustrating when an elevator is out of order when you reach the station. Accessible transportation is mandated by the ADA (Americans with Disabilities Act.) Many transportation systems offer alerts when elevators are out of service. You can also find this information on their website and get real time schedules to see when your ride is arriving. Most modes of transportation have ramps, lifts and other features to accommodate people
with disabilities. Not every station is accessible, but information on what stations are can be found on the station’s website.
Many hotels also provide disability accommodations as well. Some rooms are accessible for people with physical disabilities The rooms offer wider spaces for wheelchairs, lowered sinks and toilets in the bathroom. Other services can include braille signage and elevator usage.
Many museums, parks, and other tourist places also offer accommodations. Some museums have sensory bags for individuals with sensory processing issues. Some of the items in the bag include noise canceling headphones, light reduction glasses, and fidget toys. Tactile art manipulatives and audio tours that talk about each piece can help a visually impaired person to enjoy the exhibits. Certain museums offer free or reduced admission to people with disabilities or those who are low income. It’s important to contact the establishment to see what their policies are.
The last step is to make your decisions on your hotel and activities that you want to do. Traveling with a disability and a limited budget may be more difficult, but it’s possible. All it takes is creativity and extra planning to make memories that will last a lifetime.
rt is the recreation of reality in the form of one’s value judgments.” I believe that this statement, made by philosopher Ayn Rand, is of particular importance to those of us who are members of the disability community. Sometimes it is falsely believed that we do not possess creative capacity. Art is something we are exposed to rather than something we give to the rest of the world. It’s dropped down on us like raindrops. Too often art is dismissed as an adult pacifier, something given to us by our betters, to be played with and forgotten, but the truth is, all of us in our own way have spent a lifetime creating - creating a path to navigate this often-screwy world with joy and autonomy intact. It is through our ability to create that human beings, particularly those who have disabilities, find joy.
It is telling the story of two great and unheralded leaders of our community, both of whom have created great art in their reality and in their creations, that I wish to undertake today. Brooke Ellison and Karen Lynn Chlup are two brilliant and beautiful women with disabilities from different eras and different parts of the country. Both acquired their disabilities in childhood, Brooke from an accident, Karen from a botched injection which left her with cerebral palsy. But their difficulty lit a fire inside their hearts which made them want to become the
best possible people they could.
Why am I bringing this story to my readers’ attention? Because, my friends, these two women, in every thought, word and deed, give their best selves, and inspire us to break down old, outmoded, limiting ideas which hold ourselves and this world back. When the temptation was to settle down into mediocrity, do nothing and desire only mindless destruction, Brooke and Karen refused. They refused to fall into the trap of being defined by those who told them to forget and fade into meaninglessness. This passion and determination, in writing and in daily reality, has made wonderful things happen. They paid a price, but moved forward on a path towards joy and bliss which seemed to promise something wonderful.
Ms. Karen Lynn Chlup is less well known so I want to explore her history. Karen was born in California in 1951. She acquired her disability when she was five months old after being given a D.P.T shot which caused a very bad reaction. She spent over a month in a coma. In the 1950’s, disability of any kind, except blindness, usually meant institutionalization.
Folks stuck in facilities in those days, received neglect at worst, and at best a mixture of isolation and pity. The experts in charge see themselves like Laertes, Hamlet’s father. “I met out law to a savage race, they that horde and feed and sleep and know not me.” The attitude of many, not all within the field, was to focus on daily living skills rather than true intellectual, spiritual and social development. This is what Karen could have been restricted to. The prognosis was grim - the doctors falsely believed she would have merely a thirty percent chance to live. Her family was told even if she lived, she would be
deaf and blind, as well as unable to speak. But her inner spirit fought an almost unbearable battle and won. She retained her speech, sight and hearing, the damage consisting of a mild form of cerebral palsy, which limited her ability to use her left side. This was the first in a series of victories which Karen accomplished in her own way when everyone thought it was impossible. Having lived, the next step was to figure out how to make Karen be able to use as much of her body as possible.
Conventional methodology would
A painting of Karen as a child, wearing a purple dress, dancing with Al Jolson. not do here. Thank heaven she had a mother who was light years ahead of the rest of society. Karen’s mother, the fiery spirit known as Mama Katie, sought out a dance instructor. Al Gilbert had been a legend, a protégé of Al Jolson. It was he who had taught Annette Funicello, bringing her to the attention of Walt Disney. Al agreed to take Karen on as a dance student. It was unheard of. Handicapped people, as we were known in those days, were thought to be incapable of dance! Not true!
Karen longed to walk, jump, dance and run. Months of intense efforts paid off. After just a few months, she could hang up her iron leg brace. After a few more months, she was moving flexibly, marching around the room, doing shuffle ball changes, and kicking up her heels.
Every week was another victory, but there were battles looming on other fronts for the young woman nicknamed Kitten. Now it was time to handle her
education and build up her mind like her body. Success in this area would lead to the creation of Karen’s greatest work.
Education for people with disabilities in those days was focused on what were called activities of daily living, putting on socks, and table manners replaced the science and history typical students were spending their youth working on. Karen wanted a career, an independent, selfdirected existence. This would require taking on the system and developing new skills. After working as a sales girl, Karen went to Vocational Rehabilitation. Instead of help, those cigarette puffing experts falsely labeled her as having Down Syndrome on three separate occasions! This would mean working in a sheltered workshop. Karen endured this trial until she could stand no more. By this time it was the 1970s, and the Rehabilitation Act of 1973, had been passed. Karen lived out her creed, “Tell me I can’t, I will show you I can.”
and an ocean full of effort, victory was won. Karen was able to go to Santa Monica College and earn an honors English degree.
Now her next great victory was at hand. Karen was traveling in a park, and happened to see a carousel horse. The light went off. This horse would come to life, being revealed to be Pegasus from ancient Greek Mythology. Pegasus would take Karen, and the reader through all of the struggles and disappointments of childhood. He would pass along the lessons she had really learned from herself, Al Gilbert and Momma Katie. People with disabilities can become their best selves with the encouragement and support of those around them, but the journey like Dante’s, must be undertaken alone. Tales of the Broken Hoof is not merely Karen’s story, but the strife and ultimate victory present in all of us.
If Karen Lynn demonstrates the ability hidden and tapped by a determined spirit and a good heart, Brooke Ellison shows what can happen within the spirit of a warrior, is aroused!
Paralyzed in an accident, it would have been a temptation for Brooke to give up, to accept what the white-coated experts regard as realism. But this fiery scion of Long Island was a living example.
With her mother Jean by her side, she wrote two of the finest books it’s ever been my joy to read, Miracles Happen, and Look Both Ways. She conquered Harvard, that arcane bastion of John Adams and Henry Kissinger. It was as if the respirator she now uses breathed not mere oxygen, but divine fire. She made a choice, delivered with a smile, to wage war on a system which limits people with disabilities and to make everyone around her happier, stronger, and
A lawsuit was filed and after three years of testimony,
better in mind and spirit.
Physical and discriminatory obstacles came again and again, and she beat them. Her gentle laughter could persuade the most lost soul on earth to make their ways. She possesses a drive before which I bow in awe. Nothing, not COVID, not politicians of all stripes, can beat her. She makes you believe in the possibility of daily victory.
How many wheelchair users become international experts on stem cells, have themselves played by Lacey Chabert no less, and make Stony Brooke University a center of greatness to rival Stellenbosch? I tell this story, my friends, because there are Brookes and Karens in all of us, and in the daily refusal to give up, despite pain of body and spirit, we make victories possible as they did. They made our world possible, and so we must go forward in thanksgiving and gratitude to take up the task of showing the world our limitations need not define us.
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With support, people with autism can live interdependently, and work and be productive members of our communities. Autism has many unique advantages for people.
For example, research has shown that some people with autism outperform others on auditory and visual tasks. There are many jobs out there that give people with autism an advantage. For example, if someone has a narrow focus on video games or politics, that intense interest could one day turn into a job.
Many people with autism may be super sensitive to noise and rely on predictable routines. However, we are parents, siblings, neighbors, students, workers, bloggers and volunteers. Each person experiences autism in different ways and at different intensities. One popular saying that I promote is that if you meet a person with autism, you have only met one person with autism. No two people with autism are the same.
Here are some ideas for promoting autism acceptance:
1 Write your life story. No matter who you are, you have a story worth telling.
2 Tell people the important things you do for others. If you’re a person living with autism, sharing your story will help people understand the experiences of people with disabilities. Your story shows how you can accomplish your dreams.
3 Always project a positive image. Talk about the unique gifts of people with autism. Do not be deficit focused. Focus on what they can do, not what they can’t do.
4 Host events to spread the word about gifts and talents of people with autism to employers and the community at large.
5 Make sure that all of your acceptance efforts are based on highlighting and protecting the rights of people with autism and other disabilities.
6 Recognize that neurotypicals and people with autism are more alike than different. For instance, the COVID-19 pandemic has exposed that many people with or without autism have difficulty dealing with sudden major changes, uncertainty, unpredictability, and dealing with the constant urge of needing to be in control of one’s environment.
7 People do not suffer from autism. We suffer from the ableist attitudes and low expectations of society.
8 Autism is not a disease that needs curing. We need access to a comprehensive person centered service HCBS (Home and Community Based Services) system across the lifespan without roadblocks or IQ limits.
9 Refrain from using terms like high or low functioning. Functioning labels are harmful because they are often used to deny access to needed supports and services. In addition, it denies or minimizes our
challenges on a day to day basis in all aspects of life including but not limited to community living, employment, activities of daily living, mental health support, dealing with trauma, transportation and so forth.
10 Support self determination and dignity of risk, especially as kids move from school to adulthood.
11 Educate communities and employers on the unique strengths, talents that people with autism bring to the 21st century workforce.
12 Be trauma sensitive, especially as we emerge from the COVID-19 pandemic.
13 Create sensory friendly environments, especially in the areas of medical care, employment, and things like COVID-19 vaccine initiatives.
14 As part of being a strong ally call out ableism and gaslighting when you see it.
15 Encourage businesses, disability organizations, and non-profits to hire people with autism, not just offer services to them.
16 Advocate for systems change that is personcentered and supports people with disabilities to live in the community to the greatest extent possible.
17 Educate others and state policymakers on why IQ limits are not person centered.
18 Include people with Autism Spectrum Disorder in professional roles on research and systems change.
19 Champion Supportive Typing and all AAC (Alternative Augmentative Communication.) Communication is a civil right regardless of whether the method is evidence based or not!
20 Offer support in an empathic non-judgmental
way. Refrain from gaslighting and microaggressions.
21 Create sensory friendly environments especially in medical settings and businesses.
22 Focus on minimizing stressful situations and settings as much as possible.
23 When communicating, don’t use figures of speech like jump in a lake.
24 Support people with autism who find it difficult to self-regulate especially during times of chaos and uncertainty, whether it be at work or in life in general.
25 Celebrate the gifts, joys and talents of adults with autism.
As we slowly come out of hibernation after a long COVID winter, it is important that we remember the lessons learned and make COVID-19 policy innovations part of the new normal. This includes things like Appendix K waiver flexibility (which includes actions that states can take under the home and community-based waiver authority in order to respond to an emergency, telehealth, remote job coaching, tutoring, and more 1:1 individualized services). Many people don’t want to go back to 100% of our pre-COVID normal. For instance, day programs and segregated settings increase the risk of catching COVID more than person centered community based settings. Just going to a building to sit around and do repetitive tasks all day is not person centered. We must use this crisis to create a world that is more autism friendly, especially when it comes to sensory issues. To support people with autism and other vulnerable populations post COVID, we should have hours at stores set aside just for people with autism and other chronic issues.
From 1990 to 2008, Mouth Magazine was the leading voice of the disability rights movement. James’s Odato’s new book This Brain Had a Mouth: Lucy Gwin and the Voice of Disability Nation details the life of the magazine’s founder, Lucy Gwin.
Of the numerous notable activists in the disability rights movement (and there are many), Lucy Gwin’s name was one I had never heard up until a few months ago during a bout of some random, late night internet sleuthing when I discovered she was the founder and editor of Mouth Magazine. I had heard of Mouth Magazine years ago, and I knew it had been a publication centering around disability rights, one that deemed itself “the leading voice of the disability rights movement.” But I had never heard of Gwin.
Here’s Lucy Lucy Gwin was born in 1943. The result of a headon collision that left her with a brain injury, Lucy Gwin’s life path led her to both advocating for people with disabilities on various issues as well as founding Mouth Magazine. Journalist James Odato was inspired to write about Gwin after finding out about, and becoming intrigued by her after discovering documents pertaining to her in the archives at the University of Massachusetts at Amherst. As Odato states in the book, Mouth Magazine “.....touched on things that readers thought and experienced. She brought attention to the dearth of job opportunities, housing and training….the incompetence of
professionals, the indifference of government administrator, the plague of isolation, and the vulnerability to prejudice and abuse.”
Odato admits he had very little knowledge of the key figures or history of the disability rights movement upon embarking on telling Gwin’s story. Although This Brain had a Mouth tells the story of Gwin’s life and her activism in the disability rights movement, as well as her role as the editor of Mouth Magazine, it also serves as a good primer about the movement itself for the general public that might not know much about it. As Odato points out “We find out a lot about a lot of the civil rights movement, the women’s suffrage movement, the abolitionist movement….a lot of these movements get on the front page of newspapers, but….go to the local mall, walk up to 100 people and ask them the name of one disability rights leader….just one..out of 100 people, how many people are going to come up with a name?” The answer, unfortunately, is probably not many.
This Brain had a Mouth ultimately tells two stories. The larger story and the main focus of the book is of the founding of Mouth Magazine and the outlet it came to serve as for the disability community. The second story, one of no less importance, is of the battle Gwin fought to remedy the broken rehabilitation hospital system she found herself subjected to after her accident. After Gwin acquired her brain injury, New Medico Community Re-entry Systems, a brain injury rehabilitation center, the condition of which Gwin found to be deplorable.
While at New Medico, Gwin’s desires to be released and go home were attributed by the staff there as a symptom of her brain injury. Gwin begged friends to come rescue her, which they eventually did. Her time at the New Medico facility would spur her life of activism into what would eventually take the form of Mouth Magazine.
It’s evident from Odato’s book that Gwin herself had what one might describe as a prickly personality, yet, it’s debatable whether or not this was due to her brain injury. The book details stories from Gwin’s friends and associates that support this opinion, with one friend describing her as having a possible “borderline personality disorder,” and “fight or flight tendencies.” In reflecting on Gwin’s personality, Odato explains that he was “....trying to figure out what she was like prior to the accident and what she was like after the accident, and everything I could determine was…her personality was very much the same on both sides of the accident.”
During its years of publication, Mouth Magazine served as a sounding board for the Disability Community. As Odato says about the leaders of the Disability Rights Movement, “One of the things that Mouth Magazine was so good about is if you just read Mouth Magazine, “you would learn a lot about who these people were. You certainly will learn about the contemporary disability rights movement…” Odato observes, pointing out that the birth of Mouth Magazine coincided with the passage of the Americans With Disabilities Act in 1990 and documented the ongoing work of the disability rights movement after the Act’s passage. “She was writing about the post ADA period. Laws, just because they’re on the books don’t necessarily get honored,” Odato says. Through Mouth Magazine, Gwin aimed to hold those accountable who wouldn’t comply with the newly written Americans With Disabilities Act (ADA.)
Mouth Magazine was initially meant to serve as an outlet for brain injury survivors, like Gwin herself, to expose and reform what she viewed as the broken aspects of rehabilitation facilities, like the one she was subjected to after the accident. Yet over time, as Mouth Magazine grew, the kinds of authors in the magazine varied, with some by writers with disabilities themselves and others by parents of children with disabilities.
The deterioration of Lucy Gwin’s health and her inability to find a sucessor were the primary reasons why publication of Mouth Magazine came to an
Her time at the New Medico facility would spur her life of activism into what would eventually take the form of Mouth Magazine.
end, as she was unable to find a sucessor to lead the publication. If you visit the website for Mouth Magazine today, you’ll find that the website exists, but no updates have been made to it since 2009. The website advertises what Mouth was as “....a bimonthly disability rights magazine whose readers’ only special needs are for human rights and straight talk.” It also notes on a bright yellow banner across the site’s homepage that the site was last updated in 2009 Lucy Gwin died in 2014, but the passion she had for the work she did remains immortalized in This Brain Had a Mouth. Still, the legacy Gwin left behind of “advocacy journalism,” as Odato calls it, lives on. Of Gwin’s work, Odato says, “She gave a voice to people she identified with. She had a calling. She had a remarkable career doing this work. In your lifetime you may not meet anyone who had as much passion for anything.”
Archives of Mouth Magazine can be found at https:// www.mouthmag.com/
This Brain had a Mouth is available from amazon. com.
Hello. My name is Carter Sanders. I am a part time office assistant at Easter Seals Academy, a school for children with autism. I actually used to be a student there almost 25 years ago. I got the opportunity to work there through their post-secondary program. My everyday duties are answering phones, filing student documents, passing out things to classrooms, and assisting the office manager with various projects. Last year, I was chosen to be Easter Seals’ ComEd Energy Force ambassador. My duty as the ComEd ambassador for Easter Seals is to spread the word to the community on the importance of clean energy. Some of the things I’ve done are writing newsletters on solar energy, creating fliers containing energy saving tips for the winter, being a guest on podcasts hosted by other Energy Force ambassadors, and doing in person events at Chicago hotspots like Navy Pier and Brookfield Zoo.
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Prior to coming to Easter Seals, I was often misunderstood by my peers at my previous school. I had difficulty staying on task and was often disorganized with my schoolwork. For most of my
Carter Sanders, the article’s author, is pictured. He is a dark skinned male wearing a navy blue shirt with yellow text on it. He is wearing a mask around his neck and a Special Olympics medal.
childhood, I had a fear of the sound of school fire alarms, making my school experience very difficult. Some of my classmates actually teased me about my phobia by imitating the sound of the fire alarm. One time, the bus driver said that they may have to send me to the nuthouse. Now that I’m much older, this didn’t seem to be a very inclusive environment. Upon getting enrolled in Easter Seals, I have never seen an environment more inclusive as this organization. Instead of using a fire alarm for fire drills, fire drills are in the form of a prerecorded bell. I then learned that fire alarm sensitivity is common for those on the autism spectrum so it turns out I’m not the only one bothered by that sound.
My current struggles with autism pertain to me worrying about things I have no control over such as conflicts between people I know. I have witnessed several conflicts with different people and at times the situation becomes very upsetting to me. My mom often tells me not to worry about it as it isn’t worth me getting upset about.
I take public transportation on a regular basis as a way to get around. There have been a few instances where teenagers have said things to me that are considered insulting and at times derogatory and other vulgar remarks. That shows that I have encountered people who are potentially insensitive to the disability community. Other than that, I am able to travel without a hitch for the most part.
I received my Bachelor’s degree in computer science from Chicago State University. My computer science job search led me to a web design internship at a digital marketing agency. My internship lasted from January 2021 to December 2021. Even though my internship has ended, I strongly feel that I have gained experience to obtain permanent employment in the computer science field. I have gained experience in C++, Java, SQL, HTML/CSS, JavaScript, and UNIX (Bourne Again Shell). My dream job is to become a web developer or software/app developer. Chicago State University has a disability access center that
Some of the things I’ve done are writing newsletters on solar energy, creating fliers containing
energy saving tips for the winter, being a guest on podcasts hosted by other Energy Force ambassadors, and doing in person events at Chicago hotspots like Navy Pier and Brookfield Zoo.
provided accommodations such as extra time on tests. I was able to take advantage of those resources. Even though I’ve been out of school for a while, I’m thinking of eventually going back to get my Master’s in Computer Science, whether at Chicago State or at another school.
I am a Special Olympics athlete at a park five minutes from my house. I participate in track and field, swimming, bocce ball, snowshoeing, golf, bowling, and many of the team sports. I have won gold medals in the aforementioned sports and qualified for overnight state competitions on numerous occasions. Last winter I did the Polar Plunge with Lori Lightfoot, the mayor of Chicago.
I started participating in Special Olympics when I was 15 years old with Easter Seals and continued competing as a part time employee along with the adult program clients and the students. When the adult program closed in January 2018 due to Illinois state budget issues, I ended up trying to find a park district that offers Special Olympics. That’s where I found Marquette Park which offers Special Olympics - and the rest is history. Even if I find a full time computer science job, I plan on remaining with Marquette Park as a Special Olympics athlete. In fact, I intend on competing for Special Olympics for a very long time. I will NEVER retire from Special Olympics.
4years ago, on June 24, 2018, I said “I do” at the altar, and had a fantastic birthday wedding at our synagogue. My husband Gary is the best ever - humorous, funny, hard working and sensitive.
At the end of June and in the beginning of July, Gary was feeling unsteady on his feet and having difficulty with balance. He was in the hospital, and when finally discharged, used a cane, got physical therapy, gait training, and continued his exercises. We have seen every doctor, Gary is using a cane and when he needs to, a walker. He is slowly gaining more confidence and is starting to do things that he was not able to do when his feeling of unsteadiness started.
A combination of the friendships that I have retained at Easter Seals, my several years of attending college, and my involvement in Special Olympics have greatly helped me grow socially.
He was in the the emergency room for a few days. They admitted him, but he did not get a private room. I went to visit Gary in the emergency room each and every day that he was there. I helped him to advocate, and ask questions, too. (Learning how to advocate is an important skill).
Gary has helped me when I needed him to stay home with me when I had side effects from the COVID vaccines, and when, about a year ago, I cut my toenail and it bled so much that the day before we went to Boston to see the Red Sox,
play, my white sock turned into a red sock. We had to call 911 and go to the emergency room. One recent day in the beginning of June, I took something very hot out of the microwave and burned two of my fingers, and I had to go to urgent care. Again, Gary helped me through this, too.
Gary has been supportive in other ways, too. When I was working remotely due to the pandemic, he was supportive and I think that he actually liked hearing my storytimes for each of the classes I zoomed in with. He always reminds me that I would make a great reading teacher.
Gary likes to have a good time and also likes theater, movies, musicals, the horror genre, and wrestling. For our four year anniversary and my birthday at the end of June, we went to Monster Bash, outside of Pittsburgh, and then to Chicago. What better way to celebrate our anniversary, than to be scared together at Monster Mash.
the hotel. During this time, we communicated via text and talked to each other a few times a day. We are now back home in our freshly painted apartment,finishing our isolation in a few more days. This taught us the importance of flexibility. (We had to change our air ticket a lot of times. This latter experience also taught us that we are grateful and lucky to be vaccinated).
I guess now that we have been married for a while. we are not considered newlyweds anymore. We have created our own tradition - on the 24th of every month, we have a little piece of chocolate cake.
I am on health insurance through Gary’s job. (He has me on the health insurance as a spouse. as Gary is full time at his job.) I work part-time now, but still do not give up hope that one day I will be a full time reading teacher or learning specialist for young children.
Recently, while on our summer vacation, Gary caught COVID. We were stuck in Whitefish, Montana in separate rooms at
Our love for each other continues to grow, and catching COVID together has made it grow more. (While at the hotel, Gary said, “I like to share things with you, but not COVID.”).
We love each other, and I only hope that we will be married to each other for many more years to come, full of adventure, fun, travel and no more COVID.
Economic crisis is not only having negative consequences on the financial status of Sri Lanka, but it also lowers the quality of individuals’ lifestyles. Territories in the Asian region seem to be more in an economic crisis due to the fluctuating and inappropriate policies drawn by the state and certain political parties. Excessive supply of money accommodates “inflation.” Inflation is known to be the most frustrating aspect of a fallen economic system. It is a great disappointment to say that the flourishing of the nation has been turned into a method of gaining personal privileges due to a certain set of individuals in management authority. This unbelievable destruction simply leads the country into the trash.
Anthropologically, it is a huge controversy to define how human management systems and social relationships are formed when transparency and clarity is concealed. Some contentions of logical manifestations cannot be taken granted, as the economy is more sophisticated towards the empiricism. When the development is defined in an economic eye, I would say, most of the deviated systems are monopolized violating the existing regulations and misusing the properties. However, this ingenious theft of authorities has thrown the typical lifestyle into a massive maze.
Unemployment and the depreciation of money are the dominating factors in a deviant system which exacerbates collateral damages such as excessive
impoverishment, unbearable mental distress and famine. Being born in a third world developing nation has nothing to do with misfortune, yet it is about the incompetence of existed and existing systems.
Asystem means a network which creates millions of connections with millions of categories. A broken network is like a broken fishing net. If the connections of a net are stronger, the consequence will always be positive and beneficial. If the connections are broken, consequences will be unpredictably negative. Creating a system is complicated, yet retaining a system is even more complicated.
The most basic requirement for a system to survive is a well-established set of roots. Many decades ago, civilized society was created by systems such as economy, politics, culture, regulations, traditions, beliefs, transparency, law, technology, and sociocultural essence. At the point where the government isn’t truthful, these systems are threatened.
Per capita income is the most primitive consideration in measuring a country’s income, whereas it barely associates with the productivity. This is where the discrimination arises. As far as we are aware, the South Asian region is known to be less facilitative and needs to be developed in services, productions and politics minimizing the waste. However, in such a condition, accessing the services and the market is quite challenging, especially when the country is undergoing an economic rupture.
Society is a place that had depended on what others have believed over the decades about people with disabilities. Even though people who were born with disabilities as a result of a congenital condition or people who acquired disabilities over the time can be highly independent and go far in their careers, narrow minded individuals still remain everywhere who believe that people with disabilities are just
highly dependent, grown-up set of individuals. Unfortunately, most narrow-minded human beings are more into the business field creating and spreading their personal discrimination over variety of industries. These attitudes become worse over the time as an impact of unexpected economic recessions.
Many people may believe that asking how competent we are to satisfy our needs is a fair determinate of quality of life.
I have met with several individuals with disabilities during the past two months. Within the economic instability and high inflation, industries have made unacceptable decisions to reduce the working force. The holistic view of equality and non-discrimination has been thrown away, making people with disabilities more vulnerable. Even though the world has taken the biggest steps to make it a much better and more convenient place for every individual, certain misconceptions have evolved over the decades degenerating the success people with disabilities have accomplished. When it comes to women with disabilities, gender biases are also enforced by the society restricting their economic independence. One of the individuals I had an opportunity to share experiences with was a former executive officer who
with a strong attitude. Her entire childhood was miserable, which she hated to recall. She had been brought up by a child development center. Her parents were laborers who were expecting a male child instead of a girl. When she was born, her mother has been forced to abandon her somewhere even before her visual deficit been recognized. In her words, she says “It’s hell. I have seen real demons and evil there. They kill humanity. They break personality. They brutally murdered the soul and everything in it. Simply, it is a homicide.”
Half of her childhood was wasted as a child slave. She has had no hope, aspirations, or plans for her future until she realized the power of the changes she could make in her life and in others’ lives. She was one of the million people who had been victimized by child abuses, social isolation, and brutal violations. Most children with disabilities who have spent their childhood somewhere outside their own home have encountered a number of mental, physical, and sexual harassments. She has a dream of gaining success and becoming independent economically and socially to gain a peaceful, effective life. She has worked hard and has dreamed of becoming a successful businesswoman one day in the future. Even though these circumstances might not associate to the economic crisis, the saddest attribute is that the crisis becomes a barrier to the dreams of people with disabilities even after they overcome thousands of obstacles. She has been dismissed or simply fired from work as a result of the decision taken by management reducing the working force corresponding to the fluctuating economy. More specifically, the reality is that her physical status has been compared with her co-workers. Gender biases have also negatively impacted her career.
had been diagnosed with a severe visual impairment when she was a toddler. Despite enduring discriminations and insults, she has taken all the necessary steps to attain success. Even after being rejected by her own parents and siblings as an infant, she has not given up her desire to be successful. She wanted to be a proud and an independent individual
I also met with someone who was experiencing a totally different situation. He was an extremely responsible parent of a child with a disability. The child was also affected by several medical conditions which required expensive medication. He struggledproviding for his family including his two kids and managing the medical expenses. He tried
Even though these circumstances might not associate to the economic crisis, the saddest attribute is that the crisis becomes a barrier to the dreams of people with disabilities even after overcoming thousands of obstacles.
A graphical representaton of a map of Sri Lanka. Graphic credit: werbeantrieb
to commit suicide twice due to struggling with stress because of how the economic crisis was impacting his family. His child’s behavior was aggressive because of missing a daily dose of his medicine for ADHD.
One person I met with was one of the most challenging and uplifting personalities I
have ever met. She was a university student who used a wheelchair and was taking care of her family using the money she received from the monthly payment for university students. After her father passed away, it was her responsibility to take care of her mother and four little siblings providing for their needs. Unfortunately, she struggled to take care of her family due to economic conditions. As she mentioned, she has not seen her doctor for an extremely long period of time. She stated that what she needed was justice instead of sympathy. All of these stories demonstrate the damaging consequences of high inflation. When people with disabilities are trying to achieve success, they have been stressed out by an external factor called instability.
I believe the government holds the highest responsibility to encompass a healthy and a friendly system ensuring everyone’s accessibility. Perhaps all it needs is a direct decision-making approach with zero corruption. Government needs to be sensitive and concerned towards people and the matters they are already going through. Specifically, when it comes to people with disabilities, it is a must that their rights be ensured.
Flatulence, or passing gas, is embarrassing for most of us. I noticed that I became even more cautious about bloating after I got my spinal cord injury and started to use a wheelchair. At the end of the day, people stare anyway and the last thing I want to do is to make a loud, smelly, gassy sound in the lift full of strangers. So… let me assure you, we all pass gas daily (5-15 times a day to be precise) and have been bloated at some point. However, daily uncomfortable bloating is not normal.
In simple words, bloating is a condition which makes your stomach feel inflated and sometimes painfully tight. Other unpleasant effects include general discomfort, sometimes including cramps and pain, accompanied by a feeling of “fullness” (the latter is usually associated with a delay in urination).
Although bloating is sometimes caused by serious health problems, most often it is simply a consequence of an incorrect diet or individual intolerance to certain types of food. Bloating is really just one of those annoying things that make us feel very uncomfortable. The good news is it can be prevented!
Bloating is caused by gases and the process of their formation. Typically, the human gut contains a certain
A table against a gray background. The table is entitled “Low FODMAP Diet." At the top of the image, the columns of the table going horizontally across are entitled “vegetables,” “fruits,” “proteins,” “fats,” “starches, cereals and grains.” Two columns going vertically down the table are entitled “eat” and “avoid.” Lettuce, cucumber, carrots, strawberries, pineapple, grapes, chicken, egg, tofu, oils, butter, peanuts, potato chips, tortillas and popcorn are all in the row in the table entitled “eat.” Garlic, beans, oil, blackberries, watermelons, peaches, sausage, battered fish, breaded meals, almonds, avocado, pistachio, beans, gluten based bread, and muffins are in the "avoid" column. Charleston GI Center.
volume of various gaseous substances. However, the other part of the gases is produced by bacteria living in the gut. If the number of beneficial bacteria is sufficient, then the amount of gas produced would be normal and you would not notice the bloating. But, if there is too much gas produced, the bloating can really mess up your day. Excessive gas in the digestive tract may cause uncomfortable feelings of fullness, bloating, and pain.
Bloating is most often the result of improper nutrition and often occurs after eating foods to which the body reacts with sensitivities or allergies, but can also be caused by more serious diseases.
Intestinal motility, the movement of food through the organs of the body, is important for reducing symptoms of bloating. If you aren’t eliminating waste,
when you are constipated, it can lead to a build-up of bacteria in the small intestine. Ensuring that you have optimal digestion and effective movement of food along the digestive system is important for reducing symptoms of bloating.
In addition, bloating can occur in overweight people, or be due to hormonal changes before or during menstruation, or due to reflux or eating in a rush. If you are in a hurry and don’t chew the food thoroughly or talk during meals, an extra amount of air will get into the stomach along with the food. Simple advice to avoid this: don’t talk when you eat and chew your food thoroughly before swallowing.
Bloating is often caused by foods high in FODMAP, meaning certain types of carbohydrates that are harder to break down and therefore cause bloating and gas. They are found in wheat, some types of
vegetables such as beans, radishes, onions, garlic, shallots, leeks, turnips, cucumbers, peppers, corn, Brussel sprouts, broccoli, cabbage, and cauliflower, and fruits such as apples, apricots, plums, and mangoes, and some dairy products.
Check packaged foods for the contents of the group of sweetners called polyols, such as xylitol, mannitol and sorbitol. They should be avoided by those who are prone to bloating. Erythritol may be absorbed more easily. You can notice that polyols are found in a variety of foods – even those that are described as sugar-free, such as chewing gum. Advertised as a healthy alternative to regular sugar, these compounds can also cause increased gas formation, which will result in bloating and pain.
Cut down on fatty, fried, spicy foods and fizzy drinks. Fizzy drinks contain carbon dioxide. When the drink reaches the stomach, carbon dioxide is released from the liquid – that is, literally the formation of bubbles inside the stomach and intestines. Fizzy drinks often contain increased amounts of sugar or its substitutes, which contribute to the retention of water in the body. Since excessive sugar also slows down digestion, the constant consumption of carbonated drinks becomes a ticket to the “land of bloating and constipation.”
A few simple steps you could try to reduce the possibility of bloating:
1 Soak legumes in cold water before cooking.
2 Briefly pour boiling water over cruciferous vegetables and chop them evenly before eating.
3 Check FODMAP content in foods in the app called “Monash University FODMAP diet.” You don’t need to follow the diet, but it’s a great and convenient tool to refer to.
4 Reduce the amount of fizzy drinks that you consume and replace them with unsweetened herbal teas to reduce the “gas load.” Another trick
to avoid absorbing too much air is to drink through a straw.
Stress disrupts the functions of the gut, causing bloating and discomfort. Nerves and neural networks that regulate the function of gastric motility respond to stress by changing their activity. Recent research shows that women are more vulnerable to stress because the neural circuits of the vagus nerve in men and women are organized differently.
That is why it is so important to learn self-care and stress reduction techniques to optimize gut motility and prevent bloating, especially for women.
My favorite recommendation is to start the day with 10 minutes of deep breathing while you are still in bed. It is effective and very easy to implement as a new habit, and anyone can practice it.
Probiotics are living microorganisms and substances that have beneficial effects on the body through the optimization of its microbiome. When probiotics reach the gut, they help digest food and fight pathogenic (harmful) bacteria. Good bacteria have a positive effect on the absorption of vitamins, and may help to eliminate bloating.
Probiotics are found in supplements, as well as in some products such as fermented products, like yogurts, soft cheeses (like mozzarella, and feta), kefir, fermented vegetables (such as sauerkraut, pickled cucumbers, etc.), as well as soy sauce and kombucha.
Having your probiotics in supplement form goes one step further. This offers a more targeted therapeutic intake that can be tailored to your individual gut
needs - this is the best way to get the most out of your probiotics. Recommended probiotic strains that have been well researched for bloating, specifically including: Lactobacillus acidophilus, Bifidobacterium lactis, Lactobacillus plantarum, Bifidobacterium infantis.
1 Listen to your body and find out which foods are not suitable for your body, for example, foods the body is sensitive or allergic to. The easiest way to do this is to keep a “food/symptom diary” and check how your body reacts to foods. Notice how foods that are known to cause bloating affect you
2 Check FODMAP foods that may cause gas.
3 Consider portion control and try not to overeat.
4 Eat slowly.
5 Chew your food with your mouth closed, try not to gulp your food, and don’t talk with food in your mouth.
6 See a speech therapist if your disability affects your eating style.
7 Include probiotics in your diet. Probiotics help to improve our gut health and digestion by getting rid of excess gas.
8 Exercise more often. Daily movement, even stretching in the morning, will speed up the processing of digestion and removal of waste from your body. Try cardio exercises or yoga poses – after all, by moving you stimulate the intestinal muscles, helping them to “push” the stool more effectively and, thus, prevent the accumulation of gases in the gut.
9 Check your bowel program: increasing the frequency of bowel care may reduce the amount of poo you store in your colon to produce gas. If you have a spinal cord injury - carry out digital stimulation daily in the morning or evening.
10 Use daily stress reduction techniques to ensure optimal gut function.
If you eat food that’s high in protein (e.g. meat, fish, or eggs) your gas will probably smell bad. If you eat a vegetarian diet (a lot of vegetables and fruits), your gas probably won’t smell so bad, but you’ll have a lot of it.
Excessive and/or smelly gas may be a side effect of some common medications, including: non-steroidal anti-inflammatory drugs (NSAIDS) - for example ibuprofen, some laxatives, medicines used to treat fungal infections, statins.
Don’t try too hard to hold in the gas, it may give you a stomach-ache or headache. Passing gas means your digestive system is working well.
Bloating usually goes away by itself or with the help of folk remedies. However, if you notice that you have lost your appetite, if you often feel sick, if you notice blood in your poo, have lost weight or have a fever, it’s best to consult your GP.
If you would like to learn more about nutrition and spinal cord injury, please connect with me on instagram @wheelchair_nutritionist or leave your email to get notified when my book “Nutrition for people with Spinal Cord Injury” is published:
