Laurie Oestreich: A Social Worker’s Advice on Crafting a Successful Celiac Disease Lifestyle

Laurie Oestreich is a social worker who works with teenagers and young adults. She is the author of Gluten Free is Part of Me, a picture book in rhyme to help young children diagnosed with celiac disease understand their condition and lifestyle changes.  She has an MSW from New York University (NYU) and works in New York City.

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Image by Alexandra Wang

Interview of December 23, 2019

Alexandra Wang: What is celiac disease?

Laurie Oestreich: Celiac disease is an immune disease that causes severe reactions to gluten that take place in the lining of the small intestine.  Celiac disease is often described as being like an extreme allergy to gluten.  People who have celiac disease must avoid coming into contact with anything that has gluten, a protein found in wheat, rye and barley.

Celiac disease is a genetic condition, but it is an environmental factor that triggers it. Celiac disease has a high mortality rate, because people do not know they have it or mistakes happen. The important thing to remember is that people who have celiac disease can lead happy and successful lives.

The important thing to remember is that people who have celiac disease can lead happy and successful lives.

Mayo ClinicImage courtesy Mayo Clinic

Alexandra Wang: What kind of resources are available for people with celiac disease and their families?

Laurie Oestreich: The Celiac Disease Center at Columbia University is the preeminent Center in the United States.  Their major functions are patient care (adult and pediatric), education for patients and professionals and research.

CDCImage courtesy Celiac Disease Center at Columbia University Medical Center

The internet is wonderful for finding gluten free food and recipes. Smartphones make it easier to shop for food. You can look up information anywhere.

Alexandra Wang: Is the gluten free trend helpful for people with celiac disease?

Laurie Oestreich: The gluten free trend was instrumental in promoting more availability of gluten free products. However, the gluten free food industry and consumers’ attitude toward gluten also caused lots of confusion. People without celiac disease acted as if gluten was bad. Gluten is not harmful if you do not have celiac disease.

Gluten FreeImage courtesy healthline.com

Alexandra Wang: What led you to write your book, Gluten Free is Part of Me?

GF 1Written by Laurie K. Oestrich, Illustrated by Kayla Gartenberg

Image courtesy amazon.com

Laurie Oestreich: Gluten Free is Part of Me is a nursery rhyme book. It is written in a way that young readers can understand and remember what celiac disease is in the simplest way.  The text is paired with illustrations that reinforce the information. The book is dedicated to my granddaughter Zoe. She was diagnosed with celiac disease when she was two years old. The message is that gluten free is part of Zoe, but it does not define her.

Gluten Free is Part of Me is a nursery rhyme book. It is written in a way that young readers can understand and remember what celiac disease is in the simplest way.

Alexandra Wang: Why is there so much confusion and fear about celiac disease?

Laurie Oestreich: Celiac disease is not so easy to diagnose without a test. Many people can be undiagnosed for decades.

After her second birthday, Zoe had episodes of becoming violently ill. My daughter and her husband did not know the cause. When Zoe had to be put on a stretcher and undergo an endoscopy, my daughter was traumatized. Her fear increased when the doctor diagnosed Zoe with celiac disease. The word “disease” gave her a bad impression. The terminology made the condition sound bigger and more complex than it really is.

Alexandra Wang:  How can this fear and misunderstanding about celiac disease be avoided?

Laurie Oestreich: The term “disease” can cause people to get the idea that celiac disease is contagious.  Initially, I did not like calling it a disease because that terminology seemed to stigmatize it.  However, a doctor who works at the Celiac Disease Center at Columbia University Medical Center told me that calling the condition a “disease” would ultimately reduce stigma because people would get used to hearing it.

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Gluten Free is Part of Me by Laurie K. Oestreich, Illustrated by Kayla Gartenberg

Image courtesy amazon.com

Normalizing celiac disease is part of the mission of my book.  My goal is to raise awareness about celiac disease that will allow it to be perceived as common as being allergic to peanuts, being lactose intolerant, or having visual and hearing impairments. I seek to normalize all these conditions in the book.

Normalizing celiac disease is part of the mission of my book.

Alexandra Wang: What sorts of lifestyle changes does a diagnosis of celiac disease entail?

Laurie Oestreich: Nobody functions as one after a change. People function as a member of the group based on a lifestyle. Celiac disease was a new concept for Zoe’s family. Their lifestyle had to change. They had to have gluten free diets.

The entire family’s lifestyle has changed.  It is a new way of eating together.  There must be gluten free food for Zoe at family holiday gatherings. Right now, it is Chanukah. I must look up recipes for gluten free potato latkes, instead of using my grandmother’s latke recipe. The point to remember is that Chanukah can still be fun, and gluten free latkes are just as delicious as traditional latkes.

The entire family’s lifestyle has changed.  It is a new way of eating together.

latkes 2Chanukah potato latkes Image courtesy Gluten free Baking

Alexandra Wang: What are some of the experiences that Zoe and others with celiac disease have outside of home?

Laurie Oestreich: Having gluten free diets means they cannot eat, drink, or touch anything that has gluten in it. Zoe’s family must ask restaurants if dishes have gluten in them before ordering.

Cross-contamination is also an issue. For example, whenever I have bagels with my granddaughter, I must make sure that utensils that touched gluten did not get in any spreads that she might use. When I prepare a dish for Zoe, I must use pans that did not touch gluten.

Alexandra Wang: How has this impacted Zoe’s social life?

Laurie Oestriech:  My daughter must tell other parents that Zoe has celiac disease, whenever she is invited to a birthday party. Sometimes, other parents would make accommodations. Sometimes, Zoe must bring her own food to her friends’ birthday parties.

Mistakes can happen. It is easy to forget that the person has celiac disease. People do not always know that something has gluten in it. Whenever you are not sure about the content of a product, either check its label or look it up online.

Alexandra Wang: What kind of accommodations are made for students with celiac disease at school?

Laurie Oestreich: Zoe’s school cafeteria is informed that she has celiac disease. She is served lunch on a purple plate to remind the staff of her accommodations. Zoe has not made the connection that she has a condition yet, because she is only four years old. She is, however, aware that she is given special food in order to be safe.

The purple plate is also good because her classmates can ask questions about it. The answers Zoe and her parents give would raise awareness on celiac disease.

PlateImage courtesy bamboozlehome.com

Alexandra Wang: Are there non-edible products that have gluten in them that Zoe needs to avoid?

Laurie Oestreich: Playdough can be dangerous for Zoe, because it usually has gluten in it. She cannot play with Playdough, if it is in the classroom or a friend’s house. Of course, we can get gluten free Playdough for her if she wants it. Children often eat Playdough, even though they are not supposed to. That is also an issue.

PlaydoughImage courtesy Kitchen Frau

Alexandra Wang: What led you to become a social worker?

Social worker                Social work

Image courtesy Clipart Library                  Image courtesy Fredonia

Laurie Oestreich: I switched to social work after decades of practicing occupational therapy. I learned that children and families influence each other’s behavior. Family systems and child development are linked. Figuring out what happens or does not happen at home reveals a lot of information about the children.

I can use my training in occupational therapy as a guide for social work. For example, when I see a child who has trouble at a party, I know the questions to ask that would help me to determine the child has a sensory problem or a behavioral one.

Alexandra Wang: What should parents and counselors be aware of following a diagnosis of celiac disease?

Laurie Oestreich: Be aware of how lifestyles and family dynamics change after a member is diagnosed with celiac disease. What causes certain kind of behavior? Is it celiac disease, a disability, or some other factors?  Look at how behavior affects other people. For example, how does one’s behavior influence his or her family, friends, or classmates, and vice versa. Where and when do they exhibit that behavior?

Alexandra Wang: How can school counselors help students diagnosed with celiac disease?

Laurie Oestreich: Keep gluten free snacks for them in your office to make them feel welcome. Ask the students if they would like to recommend books or do a presentation on celiac disease at school, or recommend professionals to do so.  Do not reduce the student to a label, such as a diagnosis. See the whole person.  As Zoe says in my book: “But that is just one tiny part of all the things that make me ME!”

Celiac                        March

Image courtesy Gluten Free in NC   Image courtesy LaBovick Law Group

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Ahra Sung: Advice on Anime, Video Games, Manga & People With Disabilities

Ahra Sung is an autism advocate who volunteers at New York- Presbyterian Hospital and New York Hospital Queens. She is part of the Research Associates for Pharmaceutical Science at York College (CUNY.)  Ahra has a BS in Pharmaceutical Science from York College. She is currently pursuing an MS in Pharmaceutical Science and Business at York College. Ahra founded the first anime club at York College. She is a video game, anime, and manga enthusiast whose autism advocacy includes marshaling these forms of entertainment on behalf of people with disabilities.

Ahra

Image courtesy Ahra Sung

Interview of December 21, 2019

Alexandra Wang: How are video games helpful for people with disabilities?

Ahra Sung: Video game characters can become friends for people with disabilities who are often lonely due to current attitudes about disabilities. Players can also learn decision-making skills from video games. For example, sometimes, the player must choose the protagonist’s dialogue. These situations prepare players for real life situations, including making friends.

Video games can also be like occupational or physical therapy. They help with eye-hand coordination and dexterity. There are video games that are educational and can improve memory and attention.  Video games are a wonderful alternative, if the player does not enjoy typical activities, such as sports.

Alexandra Wang: Which games would you recommend?

Ahra Sung: I would recommend the Wii Fit and Wii Sports, if the player likes sports, or is looking for an alternative for occupational and physical therapy. The video game series, Brain Age, would be great for people with learning disabilities or dementia. The player has to complete puzzles, such as Sudoku, solve math problems, and read out loud. It was invented by a neuroscientist, Ryuta Kawashima, and his team at Nintendo.

Wii Sports   Wii Fit      Brain Age

Images courtesy Nintendo

I would recommend Fire Emblem and the Final Fantasy Tactics Series for decision-making. They are turn-based strategy games, so the player has time to think about their moves. They do not have to respond quickly. Both game series also expose players to fantasy situations that differ from their daily lives. This is a wonderful, creative experience for people with disabilities.

FTA            FEImage courtesy Square Enix    Image courtesy Intelligent Systems-Nintendo

Alexandra Wang:  With all these benefits for people with disabilities, why do so many experts warn against video games?

Ahra Sung:  They believe that playing video games is not helpful for learning. They probably only watched people play or heard about video games. Before giving advice, experts should play video games themselves without bias.

Alexandra Wang: How are disabilities typically represented in video games, anime, and manga?

Ahra Sung: There are not that many characters with disabilities in them.  This might be due to stigma and lack of awareness about disabilities. There is still confusion on what disabilities are and how they should be portrayed in video games, anime, and manga.

At present, video games usually feature characters with physical disabilities. For example, the game, Final Fantasy Tactics Advance, has a character with a disability. The protagonist, Marche, has a brother who is in a wheelchair due to an illness. His life is limited, due to stigma and inaccessibility at home.

FTA 2 FTA 3

Images courtesy Square Enix

Alexandra Wang: Any notable exceptions?

Ahra Sung: The video game, Katawa Shoujo,  is exclusively about people with disabilities. The title is often translated into English as, “Disability Girls,” even though the protagonist is a boy named Hisao who has a severe heart condition. He transfers to a school for students with disabilities. His classmates have physical disabilities. As the title implies, the protagonist hangs out mostly with girls. His dialogue and choices are decided by the game player. He or she can interact with characters with disabilities.

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Image courtesy Four Leaf Studios

Alexandra Wang: What can be done to improve the representation of people with disabilities in video games, anime, and manga?

Ahra Sung: We should have more characters with disabilities in video games, anime, and manga. Cognitive disabilities, such as autism, should be included instead of just physical ones. Most of all, they should be accurate representations. Writers and producers should do research on disabilities, and consult with people with disabilities.

Alexandra Wang: Which anime and manga include positive images of people with disabilities?

Ahra Sung:  A Silent Voice is a good example. The manga was written by Yoshitoki Oima whose mother is a Sign Language interpreter. It is about a deaf girl, Shoko, and a hearing boy, Shoya. Shoko is bullied by everyone, especially Shoya, in the beginning of the story. As Shoya becomes older, he feels guilty about his past actions and changes his behavior. He even learns Sign Language. Of course, Shoko and Shoya have a romantic relationship in the end. Sign Language is animated in this manga and anime.

Silent Voice                Silent Voice 2

Image courtesy Amazon                             Image courtesy Kodansha

Alexandra Wang: Are there anime with confused and mixed messages about people with disabilities?

Ahra Sung: The anime, Fullmetal Alchemist, is about two boys who are mutilated after trying to revive their mother with alchemy. The procedure is forbidden, so they have to pay for it with their bodies. Edward has prosthetic limbs, called ‘automail.’ Alphonse, his brother, does not have a physical body for most of the show. His soul is trapped in a suit of armor. The brothers’ prosthetics enhance their abilities. They are faster and stronger due to these prosthetics.

However, Edward and Alphonse are punished and become disabled. They want to have their original bodies back.

FMA  FMA 2

Images courtesy Funimation

Alexandra Wang: Which anime shows disabilities as something negative?

Ahra Sung: There is an anime, Yuki Yuna is a Hero, takes place in a post-apocalyptic world. The protagonist, Yuna, has a friend who uses a wheelchair. After fighting monsters, Yuna and her friends become physically disabled temporarily. They become paraplegics, paralyzed, deaf, blind, mute, or fall into coma. Disabilities are seen as side-effects or sacrifices for using their powers. This anime also sends the message that everyone is temporarily not disabled.

Disabled

Image courtesy Project 2H

Alexandra Wang: What kind of anime, manga, or video game would you create for autism?

Ahra Sung: My anime and manga would be based on my own life called, Autism and Ahra. Viewers and readers would learn what daily life is for people with autism. It can be a video game too.

The message of Autism and Ahra would be: You can have autism and still be happy and successful. It would be like the series The Good Doctor.

The Good Doctor is a television show about a man, Shaun, who has autism and is a successful surgeon. Shaun also has savant syndrome. He is a talented surgeon because of his conditions. Shaun is regarded as ‘other,’ but, at the same time, his character shows that people with autism can have successful careers and be happy.

Alexandra Wang: As an activist and future pharmacist, what are your career goals?

Ahra Sung:  I hope to improve healthcare for people with disabilities. Many disabilities, such as autism, come in tandem with conditions, such as anxiety. During my early childhood, it was tough to get good services and adequate healthcare. My ultimate goal is to invent new drugs for illnesses.

Alexandra Wang: What motto or philosophy do you go by in life?

Ahra Sung: Do not let your disability define you.

Autism

Image courtesy ufmcpueblo.com

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Kerry Thompson: Advice on Steps in the Right Direction for Accessibility and Inclusion (with Rhythm, of course!!!)

Kerry Thompson, a Deafblind dancer, is the founding executive director of Silent Rhythms, Inc, a nonprofit organization that uses various types of arts (including dance) to promote inclusion in the arts for people with disabilities, while using the arts to promote inclusion in society. They also work on teaching inclusion and awareness to various organizations, corporations, and arts institutions. She promotes disability rights through the Disability Rights Fund (DRF) which is linked to United Nations’ Convention on the Rights of Persons with Disabilities (CRPD) and The German Marshall Fund of the United States (GMF.) She also blogs about disability awareness. Kerry received a BA in English and a BS in Psychology from Louisiana State University. She has an Ed.M. in Human Development and Psychology from Harvard University.

KerryImage courtesy Matthew J. Lee/Boston Globe

 Interview of December 13, 2019

Alexandra Wang:  When did you fall in love with dance?

Kerry Thompson:  I have loved dancing since I was a little girl.  I took some ballet as most toddlers do.  Like many families with children with disabilities, there was not enough money for me to take dance classes as a child.  I began dancing again after college. When a friend invited me to join her for a salsa lesson, I fell in love with salsa.

Alexandra Wang:  What inspired you to start a dance program?

Kerry Thompson:  I started Silent Rhythms as a program, then, as a nonprofit, to share my love of dance with others.  Silent Rhythms is also about removing financial, physical, communications, and transportation barriers from dance and artistic events.

silent rhythmsImage courtesy Silent Rhythms

 Alexandra Wang: How does dancing help people with disabilities?

Kerry Thompson: Dancing helps to begin the dialogue between a person with and a person without a disability.  Often those without disabilities are too intimidated or afraid to approach someone with a disability.  Dancing removes that barrier. It is also a way for both sides to communicate with each other even if one knows American Sign Language (ASL) and the other does not.

Dancing helps to begin the dialogue between a person with and a person without a disability.

FeetImage by Matthew J. Lee courtesy Boston Globe

Kerry Thompson Teaches Salsa Dancing For The Deaf

Video by Angela Rowlings courtesy Boston Herald

 Alexandra Wang: Tell me about the name “Silent Rhythms.”

Kerry Thompson: I chose the name, “Silent Rhythms,” because I wanted a name that conveyed the quiet sensation that everyone can feel when dancing.  One question that I am always being asked is: “How do Deaf people learn about music, or feel the rhythm?” And the answer to that question is: “They feel the rhythm.”

I chose the name, “Silent Rhythms,” because I wanted a name that conveyed the quiet sensation that everyone can feel when dancing.

Alexandra Wang: What is your favorite dance style?

Kerry Thompson: I love Rueda, which is salsa dancing as a group.  Rueda dancing is how I started with salsa.  I love Rueda the most because each move has a hand signal. I enjoy many dance styles, but the ones that I like the most always require a partner, such as salsa, bachata, merengue, ballroom, and swing.

dance 1        dance 2

Image courtesy Boston Herald       Image by Matthew J. Lee courtesy                                                                        Boston Globe

Alexandra Wang: Is there a link between dance and Tactile Sign Language used by the Deafblind?

Kerry Thompson: Definitely!  When you cannot hear as a dancer, you rely on touch and sensation. You are sensitive to every little touch and rhythm.  In learning Tactile Sign Language, I definitely used the instincts that I had developed as a dancer.

Alexandra Wang:  How is Braille like dance steps?

Kerry Thompson: Braille dots follow a pattern just as some dance steps follow a pattern.  You can also change styles in both Braille and dance.  With Braille, you can decide to use Grade 1 (easy), Grade 2 (harder), or Grade 3 (most difficult.) It is the same for dance steps.  You can keep it basic, or challenge yourself to learn more complicated patterns.  The keys are patience, persistence, and practice!!!

Tactile asl            tactile asl 2

 

Tactile Sign Language alphabet.           Image courtesy SAGE Publications

Image Uploaded by Stormi on Pinterest

BrailleBraille Alphabet. Image courtesy National Braille Press

 Alexandra Wang: How can school counselors support Deafblind or other students with disabilities?

Kerry Thompson: I find that, very often, Individualized Education Programs (IEPs) forget to ask the student with a disability what they want, not just what they need.  School counselors should work to empower students by asking them about their goals and what they want out of life. Ask students how they would solve a problem themselves rather than trying to solve problems for them.  This will certainly help set them up for life after school when, in order to be empowered, they will need to know how to advocate for themselves.

Ask students how they would solve a problem themselves rather than trying to solve problems for them.

Alexandra Wang: Any advice for starting dance or other programs for people with disabilities?

Kerry Thompson:  There are many well-meaning and well-doing organizations that want to do better for people with disabilities, but often lack the skills and knowledge to do so.  It is important to ask people with disabilities what they want.  Do not just offer a program without their input.  Surround yourself with those who are familiar with people with disabilities. Train dance teachers how to work with people with disabilities.

Global Deafblind Awareness Week at Salsa in the Park with Silent Rhythms

Video courtesy Kerry Thompson

deafblindImage courtesy Deaf Network of Texas

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Kitty Westin: Advice on Eating Disorder Awareness and Advocacy

Kitty Westin is part of the Eating Disorder Coalition (EDC.) The EDC (The DC organization) introduced the, the first legislation on eating disorders enacted by Congress as part of the 21st Century Cures Act. Kitty founded the Anna Westin Foundation to support the advocacy for people with eating disorders. The Anna Westin Foundation was later merged with the Emily Program Foundation to form WithAll, a non-profit foundation with the same mission. She has an MA in Counseling Psychology from St. Mary’s University of Minnesota.

Kitty and Mark

Kitty and Mark Westin beside Anna’s photo during the open house for the Anna Westin House. Image courtesy The Emily Program/WithAll

Interview of October 31, 2019

Alexandra Wang: What are eating disorders?

Kitty Westin: Eating disorders can happen to anyone regardless of who and what they are. They are caused by a combination of interrelated factors that can include genetic predisposition, brain chemistry, cultural influences, a trauma or loss, and complex family dynamics.

Eating disorders can happen to anyone regardless of who and what they are.

Alexandra Wang:  Are eating disorders physical or mental illnesses?

Kitty Westin:  Eating disorders are mental illnesses. Unlike physical illnesses, mental illnesses do not have a straightforward diagnostic.  Their physical manifestations are often confusing or misunderstood. When my daughter, Anna, had anorexia, nobody understood her condition. Anna once said: “I wish I had two broken legs.  That way, people would see what I am going through.”

Eating disordersImage courtesy Vanderbuilt News

Alexandra Wang: What are some of the misconceptions about eating disorders and other mental illnesses?

Kitty Westin: Although there is more attention and education on mental illnesses, there is still a lack of awareness on eating disorders. People are still confused about them. They tend to think of mental illnesses as a character defect or a behavioral problem. People think the illness is based on attitude and choice. There is a belief that it is possible for people to recover from mental illnesses by changing their attitude. Understanding that mental illnesses are not choices will reduce stigma. This will save lives.

Alexandra Wang: Why is there so much confusion about eating disorders even in the medical community?

Kitty Westin: There is not enough training on eating disorders in the medical community. When I was in graduate school earning my MA in Counseling Psychology, my colleagues and I interviewed several physicians. They revealed that they only read half a page on eating disorders in medical school.

There is not enough training on eating disorders in the medical community.

Mental illness

Image by Paget Michael Creelman via Wikimedia Commons

Alexandra Wang: In addition to a lack of awareness in society and the medical community, what are other barriers to supporting people with eating disorders?

Kitty Westin: Our insurance did not cover treatment for eating disorders. The insurance company did not see eating disorders as medical necessities. Anna did not get the help that she needed and lost hope. I am certain that, if she had proper treatment, Anna would be with us today.

The Anna Westin Act of 2015 was enacted by Congress in December 2016, as part of the 21st Century Cures Act.  The bill was written to help to improve health care professional training and clarity of mental health parity. This means that those affected by eating disorders are afforded the same protection as other illnesses. I also foster efforts on awareness and advocacy for people with eating disorders using money received from Anna’s insurance company in a private settlement for “wrongful death.”

Anna did not get the help that she needed and lost hope.

Alexandra Wang: What is the best way to understand eating disorders and their treatment?

Kitty Westin: The analogy that I like to use for an eating disorder is a raft. Treatment is a lifeboat. Anna was on a raft in a storm. We were on the bank telling her to get off it. But getting off the raft, which is the only path to survival, is scary and difficult for her.

Treatment is a process that guides the person to get off the raft into the lifeboat. Each session is like a step off the raft. Successful treatment is when the person realizes that it is safe to leave the raft.

Alexandra Wang: Are the media and our culture of thinness to blame for eating disorders?

Media

Image courtesy Casa Palmera

Kitty Westin: The media does not cause eating disorders; if it did, then all of us would have them. However, there is a toxic culture of thinness for females in our society. It sends the message that there is only one ideal size and shape. Females get the message that they must be thin, while males usually get the exact opposite message. Programs on TV often seem to romanticize eating disorders.

The media does not cause eating disorders; if it did, then all of us would have them. However, there is a toxic culture of thinness for females in our society.

Alexandra Wang: Can the media be turned around and used as a mechanism to help prevent or help cure eating disorders?

Kitty Westin: I believe the media can have a positive influence on our understanding and treatment of eating disorders. There are many groups using social media to distribute information on eating disorders. This can be a great help to individuals and their families.

Alexandra Wang:  What sorts of behavior indicate an eating disorder?

Kitty Westin: There are early signs to look for in an eating disorder. The person will be obsessed with food or labels. They may avoid being with people during mealtimes. They may avoid going to the cafeteria at lunch time. They may be secretive about their actions.

Alexandra Wang: What should parents do if they observe these behaviors?

Kitty Westin:  Address your child directly with the behavior that you observed. Do not say, “We think you have an eating disorder.” That will turn the child off.  Only mention facts with concerns. Say, “What can we do about it?” Parents can also say: “I am not an expert, but I will take you to someone who is.”

Alexandra Wang: What behavior is harmful when approaching a person with an eating disorder?

Kitty Westin: Words could be more harmful than they seem. Anna told me that she believed her anorexia started when her friend told her that her thighs were big. This happened when she was 15 years old.  Her friend probably did not realize how much his words hurt her, but the damage was done. Anna thought she had to lose weight.

Statements that seem harmless can be dangerous. For example, saying to someone: “Have not seen you for a while. You look good today.” Statements about one’s appearance can trigger eating disorders.

Words could be more harmful than they seem.

Alexandra Wang: What kind of behavior would be more helpful?

Kitty Westin: WithAll, an organization created to strengthen eating disorder prevention and to provide support for people with eating disorders started a campaign called, “WHAT to SAY,” to raise awareness on this issue. We provide a list of statements, “5 healthy food + body phrases to say to kids,” on our website.

I coach people to say: “It is great to see you,” or “It has been too long.” Those statements validate that you are happy to see that person. They do not pass judgement on that person.

WithAll

Voice

Image courtesy WithAll

Alexandra Wang: Are there practices or initiatives that are misleading and could potentially trigger eating disorders?

Kitty Westin: Body Mass Index (BMI) testing is more harmful than helpful for children. Children and parents do not fully understand what it is. Children compare each other’s BMI scores. Children with high BMIs are told that they are fat. This affects their self-esteem. It can trigger an eating disorder.

Women’s magazines tend to encourage readers to take BMIs seriously. They do not realize that having a high BMI does not mean they are fat. Like words, BMI scores can have a lingering impact on people.

Number

Image courtesy Healthy Teen Project

Alexandra Wang: How can school counselors support students with eating disorders and their families?

Kitty Westin: School counselors should educate themselves about eating disorders. We should not expect everyone to know everything, but at least try to know something about eating disorders. There is a short assessment for screening eating disorders, the SCOFF Questionnaire.   The National Center of Excellence for Eating Disorders (NCEED) is working on apps that will make it available online. School counselors should be aware of resources and referrals for eating disorders.

There is a short assessment for screening eating disorders, the SCOFF Questionnaire. The National Center of Excellence for Eating Disorders (NCEED) is working on apps that will make it available online.

Alexandra Wang: Which organizations would you recommend to people with eating disorders and their parents who are looking for information and support?

Kitty Westin: The NCEED provides support to people with eating disorders and their families. The Academy for Eating Disorders (AED) is great too. WithAll and the EDC provide excellent resources on eating disorders. I would also recommend the National Alliance on Mental Illness (NAMI), for all mental illnesses.

NCEED AEDEDCNAMI

  Images courtesy NCEED, AED, WithAll, EDC and NAMI

Alexandra Wang: As an activist for eating disorder awareness, what improvements do you hope to see in the future?

Kitty Westin: I am very hopeful that the NCEED will be able to prevent eating disorders in the future.

Anna

Image courtesy Business Wire

Alexandra Wang: What advice would you give to people with eating disorders and their families?

Kitty Westin: Make sure your insurance covers treatment for eating disorders. Recovery is possible. Given support and treatment, people can completely recover from eating disorders.

Given support and treatment, people can completely recover from eating disorders.

Share your story and advocate for your cause. People often expect me to focus on what happened to Anna. I do tell her story.  However, I want to focus on making progress and efforts for eating disorder activism. I am happy if even just one person hears my story.

Recovery is possible. Given support and treatment, people can completely recover from eating disorders.

Ed awareness

Image courtesy Strive For Good Health

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Peter Kline: Advice on Helping People with Disabilities Run for the Win

Peter Kline is the founder of Marathons With Meaning, an organization that helps people with disabilities to compete in marathons. He has partnered with over 60 ‘rider athletes’ in marathons across the country. Peter is a senior vice president and wealth management advisor at Merrill Lynch Wealth Management in the State of Washington.

Peter 1     Peter 2

Images courtesy Marathons With Meaning

Interview of November 4, 2019

Alexandra Wang:  What inspired you to start running in marathons?

Peter Kline:  My father was a track and basketball coach at my high school. Although I was short, I was determined to make the basketball team. I tried hard and made it! I started running in marathons in 2009, when I was 52 years old.  Running in marathons was just a new way for me to keep that same competitive spirit alive.

Alexandra Wang:  What is the life lesson to be learned from competing in marathons and, specifically, in Marathons With Meaning?

Peter Kline:  The key lesson that I learned is that you do not have to be the best one. Your goal should be trying to be the best that you can be.  Everybody starts somewhere. You just have to do it.

Your goal should be trying to be the best that you can be.

Some runners were faster than I was at the beginning of a marathon, but they did not make it to the finish line. We all know the fable, The Tortoise and the Hare. Slow and steady wins the race.  As for running in Marathons With Meaning, you do it for a cause, rather than try to be the fastest runner.  It is not about winning; it is about the message that we would like to convey to others.  The message is that everyone can actively participate in marathons regardless of his or her athletic ability.

T and HImage courtesy Gotham Gal

Alexandra Wang: What led to the founding of Marathons With Meaning?

Peter Kline: A friend of mine had glioblastoma. I ran in the Boston Marathon in 2009, to raise money for cancer research in his honor.  While running in the Boston Marathon, I saw a father who was running and pushing his son who had multiple disabilities. This inclusion added to the spirit of the race.

I wondered about other children with disabilities. I also thought that it would be a great idea to provide more opportunities for people with disabilities to actively participate in public sporting events. ‘Winning’ a race is an ambiguous victory. Everyone who competes in a race is both an athlete and a winner.

Everyone who competes in a race is both an athlete and a winner.

Alexandra Wang: How did you float the idea? What were some of the stumbling blocks?

Peter Kline: Before the next Las Vegas Marathon, I reached out to the Make-A-Wish Foundation and the Seattle Children’s Hospital for support.  They said that it was a dumb idea.  They thought children with disabilities would rather go to Disneyland than participate in a marathon. My attitude was that children with disabilities should be asked what they truly wanted instead of being told what they should want.

I met a young woman with cerebral palsy when I was running in the Las Vegas Rock ‘n’ Roll Marathon in 2012. Working and running together, we were able to complete the marathon. It was a team approach to marathon running. It was a winning approach!

T and K

Image courtesy Eden Capsouto/Peter Kline

Alexandra Wang: What is the significance of the name, Marathons With Meaning?

Peter Kline: The idea behind that name is to add a cause to marathons.  In the case of Marathons With Meaning, the cause is the inclusion of people with disabilities.

Alexandra Wang: How do you connect with partners for marathons?

Peter Kline: It is a team effort—just like the running itself.  Every time I run in a marathon, I give business cards to people and parents who are watching the race. I encourage them to contact me if they would like to actively participate in a marathon.  To be truthful, I am always on the lookout for potential partners.

Alexandra Wang: Tell me about some of your partners in Marathons With Meaning.

Peter Kline: I have run with partners of all ages, abilities, and occupations. The youngest partner was 8 years old, and the oldest one was a 37-year-old man with spina bifida who has very little mobility. Many partners have mobility impairments. Some have cognitive impairments. Some are nonverbal. There are amputees, people with cerebral palsy, autism , or traumatic brain injuries. My partners and I have always made it to the finish line. They have all been fabulous partners!  Other runners loved our presence in the marathons.

My partners and I have always made it to the finish line.

Alexandra Wang: What sorts of accommodations do you make for your partners?

Peter Kline:  To participate in marathons, my partners use jogging strollers or wheelchairs. For that reason, I like to call them, ‘rider athletes.’ The marathons are always 26.2 miles in length.  We also participate in other races, such as 50k’s and 100-mile ultras. I do not follow the marathon lines exactly, so that my partners can be closer to the crowds and have contact with them.

I put the names of my partners, as well as a list of the marathons they have completed so far, on the sides of their jogging strollers. Other runners and many spectators like to know a bit about my partners. It adds to the spirit of the event.

Race 1          Race 2       Race 3                    Images courtesy Peter Kline

Alexandra Wang: What is the experience like for the rider athletes?

Peter Kline:  The partners and their parents are scared at first, but have a great time later. They absolutely love to actively participate in marathons. It is an exciting experience for them, as well as for me. When we near the finish line, we all wish it would never end.

FinishImage courtesy Peter Kline

Alexandra Wang: How do you and your partners prepare for marathons?

Peter Kline: Training is the key to participating in a marathon. I practice running with a jogging stroller. Sometimes I place a weight in it, or ask my partner to ride in it.

It is crucial to remember that your partner in the jogging stroller or wheelchair is your teammate. My partner and I draw up a motivation plan together. I provide the motivation for the beginning of the race and my partner provides it for the next part, and so on. It has proved to be a very successful strategy for reaching the finish line. Make sure to have a practice race before the marathon.

It is crucial to remember that your partner in the jogging stroller or wheelchair is your teammate.

Practice 1  Practice 2

Images courtesy Peter Kline

Alexandra Wang: What were some of the experiences that you had with people with disabilities before the Boston Marathon in 2009?

Peter Kline: I did not know anyone with a disability when I was a child. My own children do not have any disabilities. My first exposure to a person with a disability was when my wife and I hosted a student from Ukraine for 8 weeks. She was a paraplegic who became paralyzed after a tree fell on her back. Initially, my wife wondered how we would be able to accommodate her. I was not nervous at all. Accessibility was a new concept for us all. Along the way, we figured it out how to help her.

She was a swimmer prior to the accident. She was very determined to continue to be active. She insisted on pushing her wheelchair up the hill to our house. We got her a swimming coach. Later, she won a silver medal in a Paralympic game.

Alexandra Wang: What is your advice in supporting people with disabilities?

Peter Kline: Put yourself in their shoes. Imagine what it is like to have a disability. Be kind to them. Always give them a chance. Work with people with disabilities rather than speak for them.

Work with people with disabilities rather than speak for them.

Voices of runImage courtesy Peter Kline/Brooks Running

BEHIND THE SCENES

Peter and a rider athlete will be participating in The Daytona 100 Ultramarathon on December 7 and 8, 2019.  Their goal is to start, enjoy the journey, and finish! Go Marathons With Meaning!

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Félix Garmendía: A Poet’s Advice On Finding Your Invisible Wings

Félix Garmendía, a poet, is an activist in the LGBTQ+ disability movements. He is the author of Flying On Invisible Wings, an anthology of poetry.  He is a 30-year HIV survivor and lives with Inclusion Body Myositis , a progressive muscle disorder that has confined him to a wheelchair. Félix resides in Hudson Heights, New York, with his husband Denis Beale.

Felix 1                                    F and D

Image by Denis Beale                               Image courtesy Félix Garmendía

Interview of October 8, 2019

Alexandra Wang: Tell me about your anthology of poetry, Flying On Invisible Wings.

Flying on Invisible WingsImage courtesy Amazon.com

Félix Garmendía: My book, Flying On Invisible Wings, is about my experiences in Puerto Rico and New York, my family, friends, the AIDS Crisis, having disabilities, and accepting myself. It was published on June 1, 2019, which was the 50th Anniversary of the Stonewall Riots.  Now, I am working on the sequel.

Stonewall InnImage by Denis Beale

Alexandra Wang: What is the significance of the title Flying On Invisible Wings?

Félix Garmendía: I believe that accepting yourself and your role allows you to fly on invisible wings. This is based on my own experiences. I came out in 1982, and I acquired a few conditions throughout my life.

I believe that accepting yourself and your role allows you to fly on invisible wings.

Denis and I had many friends who died of AIDS during the AIDS Crisis. This is a significant portion of the book. I always wondered why they died and I survived. Maybe, by telling their stories and mine will allow me to fly on invisible wings. Hopefully, readers will be able to fly on their invisible wings too.

WingsImage courtesy Pheonia-Serafial

Alexandra Wang: Did you share your poems before Flying On Invisible Wings was published?

Félix Garmendía: I posted some poems on FaceBook. Sometimes, I turned them into memes. They went viral. A friend suggested having them published in a book.

Alexandra Wang: How long have you been writing poetry and what has changed in your poetry over the course of your career?

Félix Garmendía: I began writing poetry in my early teens. Poetry has always allowed me to have conversations with myself.

Poetry has always allowed me to have conversations with myself.

My early poems were dark. I grew up during the 1970s. People were not accepting of gays back then.  I wrote poems about my frustration with homophobia.

Alexandra Wang: Did this change in adulthood?

Félix Garmendía: I moved to New York from Puerto Rico in 1988. I wrote a lot of poems about experiences in Puerto Rico, family, and moving to New York. Poetry has always been a great coping mechanism for me, especially, after acquiring some disabilities. In spirit, some of these poems are Puerto Rican. Although they use some Spanish words, their syntax is completely English.

Poetry has always been a great coping mechanism for me, especially, after acquiring some disabilities.

Alexandra Wang:  What role did poetry play in your life as a person with disabilities?

Félix Garmendía:  Poetry played a huge role in coping when I got Inclusion Body Myositis and became a quadriplegic. Poetry was like therapy for me. It allowed me to cope with reality. I love art, but cannot paint with my hands, therefore, I paint with words.

I love art, but cannot paint with my hands, therefore, I paint with words.

Poetry could also express how important my relationship with my husband, Denis, is to me. We have been married since 2012. It was one of the first same-sex marriages to be legally recognized.

Alexandra Wang: Who are your favorite poets?

Félix Garmendía: My favorite poets are Pablo Neruda, Walt Whitman and Allen Ginsberg . I grew up with their poetry. Their words inspired me to become a poet.

Neruda was the first poet whom I read. He taught me to express feelings and love with words. I would read his poetry in a gay bar by the window and look at the sea. I did that, so my situation would match the scenery in some of his poetry. It was my dream for somebody to notice and befriend me for that reason. Whitman’s poetry had themes of masculinity that were different from most literature. His poetry had themes of vulnerability. Ginsberg’s poetry is like an exposed nerve that vibrates with universal messages. Nobody else have been able to portray in such an honest and uniquely crude way.

Pablo Neruda          Walt Whitman

Image courtesy The Paris Review          Image courtesy National Review 

                              Ginsberg

                                            Image courtesy PBS

Alexandra Wang: Does your husband, Denis Beale, write poetry too?

Félix Garmendía: Denis does not write poetry, but he sometimes helps me with my writing. English is not my native language.  I, sometimes, ask my husband for advice in choosing the right words.

Alexandra Wang: Any advice on having poems published?

Félix Garmendía:  Remember, your poems can help yourself, as well as others. Readers will feel that they are not alone. They will have an author whom they can relate to.

Remember, your poems can help yourself, as well as others.

Alexandra Wang: Why did you move from Puerto Rico to New York City?

Félix Garmendía: I was a theatre teacher in Puerto Rico. In 1988, I moved to New York when I was offered a teaching job by the New York City Department of Education.  When the job disappeared, I decided to pursue a Master’s degree in art at New York University. After I received my degree, I taught art in New York City public schools.

Frida and catImage courtesy Lost Angeles County Art Museum

Alexandra Wang: Tell me about your experiences as a teacher in the New York City public school system.

Félix Garmendía: I taught my students that art is open to everyone. There should not be limits in any academic field. I developed lessons on Frida Kahlo since she is important for female students, as well as students with disabilities.

I taught my students that art is open to everyone.

Alexandra Wang: What is your favorite painting by Frida Kahlo?

Félix Garmendía: My favorite Frida Kahlo painting is Wounded Deer. The deer is me. I am racing through an open forest under the stormy sky. The deer is wounded, but running away from it all. It is looking for a place to either heal or die.

Frida deer              Felix deer

Image courtesy Frida Kahlo.org     Image courtesy Charles Ford-Barrett

Alexandra Wang: How did the AIDS Crisis affect your teaching career?

Félix Garmendía: A lot has changed for LGBTQ+ Community in schools since I taught. Now, schools have LGBTQ+ flags and Gender and Sexuality Alliances (GSA.)

Schools were not always open to the LGBTQ+ Community. They preferred to avoid the topic until very recently. I had a principal who was not accepting of gay teachers. She was not thrilled when she found out that I had a photo of Denis and myself on my desk. I refused to remove it from my desk. I thought this was important because I had a student who was clearly a transgender. There were probably gay students in the class too. They needed an adult whom they could trust and talk to.

Alexandra Wang: How have attitudes toward HIV and AIDS changed?

Félix Garmendía:  My husband and I are proud HIV survivors of 30 years. In the 1980s, this disease was new and affected everyone regardless they had it or not. Many people were dying or thought they would in a few months. People also did not know what HIV or AIDS was and were frightened. A huge misconception was that HIV or AIDS could be transmitted by just having basic contact with someone who had it. Many people thought only gays could get HIV or AIDS. I wanted to give a presentation on HIV to raise awareness, but my principal did not want me to do it.

Felix PRIDE                            Felix HIV

    Images by Denis Beale

Alexandra Wang: How can teachers and school counselors support those students and colleagues in the LGBTQ+ Community?

Félix Garmendía: Approach them with empathy. Children need adults whom they can trust. If you are a member of the LGBTQ+ Community, disclosing your own sexuality can help them not feeling alone. Do not be afraid to confront anyone if the person made offensive statements about the LGBTQ+ Community. Be the heroine, Antigone , in the Sophocles tragedy.  Have workshops about the LGBTQ+ Community. This advice also applies to students and colleagues with disabilities.

Be the heroine, Antigone, in the Sophocles tragedy.

Felix in Rose ShirtImage by Denis Beale

Alexandra Wang: What is your basic philosophy about life?

Félix Garmendía: Discovering yourself should be like opening a box of jewels rather than a Pandora’s Box. Encourage others to do the same. Find and fly on your invisible wings. Take it easy and enjoy the ride!

Discovering yourself should be like opening a box of jewels rather than a Pandora’s Box.

AIDS Month Ribbon                              Myositis Month

 

Image courtesy Caring Communities            Image courtesy Myositis.org

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Sena Pottackal: Advice from a Badass Blind Chick on Using Public Relations to Promote Disability Awareness and Inclusion

Sena Pottackal is a diversity and inclusion advocate and blind activist. She works as an intern at NBCUniversal Media, and is pursuing a MS degree in Public Relations and Corporate Communication at NYU School of Professional Studies. Sena is the recipient of the 2019 Interpublic Group of Employers (IPG) Scholarship from New York Women in Communications (NYWICI), the premier organization for female communications professionals.

SenaImage courtesy Sena Pottackal

Interview of September 13, 2019

Alexandra Wang: What inspired you to go into Public Relations and Communications?

Sena Pottackal:  Even as a child, I enjoyed sharing and listening to stories. I learned about this field of study when I was in college. A job in Public Relations and Communications will allow me to connect to people on both a personal and professional level, which is the ideal career for me.

Business          PR

Image courtesy Cape Business News          Image courtesy The Biz Foundry

Alexandra Wang: Your Twitter description is “badass blind chick determined to do good through PR.”  What should we expect from you in terms of PR–and how badass will it be?

Sena Pottackal: My goal is to use strategic communications and social entrepreneurship to remove artificial barriers to disability inclusion.  My intention is to empower people with disabilities to help forge their dreams into reality.  It will be pretty badass in terms of the positive impact that I plan to make.

 Alexandra Wang: You explained that, in addition to your PR career, you are planning to run for public office. What are some badass changes that we should expect from you?

Sena Pottackal: I hope to work with the government to create public policies mandating accessibility and inclusion.  My plan is to enable people with disabilities to fully participate in personal, professional and academic experiences, and become fully empowered individuals.  I would love to be known as “the badass blind chick who helped open the door for people with disabilities.”  I would be honored to be known by that moniker.

I hope to work with the government to create public policies mandating accessibility and inclusion.

 Alexandra Wang: What are some of the steps you have taken towards your goals, and what plans do you have for the future?

Sena Pottackal:  I recently spoke to communications executives at Carnegie Hall during the PR Council’s Critical Issues of the Modern Workforce Forum.  My subject was  how to create disability inclusive professional environments.  The speech was extremely well received, and  I certainly intend to do more public speaking about disability inclusion in the future.

Carnegie HallImage courtesy Galadari Printing & Publishing LLC

Following my graduation, I plan to start a benefit corporation that will provide various communications services to clients.  My plan is to both hire people with disabilities and allot a portion of the profits to fund scholarships for communications students with disabilities.   My dream is to help creating a world where people with disabilities are simply another group in the workforce, making contributions to society, and finding personal success.

Alexandra Wang: You recently received a scholarship from New York Women in Communications (NYWICI.)  How has this impacted your studies and career?

WICIImage courtesy NYWICI

Sena Pottackal: NYWICI profoundly changed my life! This amazing organization empowers female communicators at every stage of their career.  It helped me jump start my career.  

Before joining NYWICI, I spent five long and frustrating years looking for an internship. When NYWICI awarded me the IPG Scholarship and Internship, it helped me finally break into the workforce and become the first blind person to work at Weber Shandwick, the second largest global PR agency. As a result, NYWICI also helped me gain full-time work experience, enabling me to successfully pursue an internship at NBC Universal, where I work now.

Sena WICIImage courtesy Sena Pottackal

Alexandra Wang: Why was finding an internship so difficult for you?

Sena Pottackal: In spite of lots of good intentions, it is still hard for people with disabilities to get internship placements and employment. For starters, some websites, which house job portals, are not accessible to the blind because these websites were not built to support screenreaders. Other times, even though a website is made mostly screenreader accessible, an important button or check box is not programmed to be selected with a screenreader.  These are all barriers that prevent a blind job seeker from independently completing the application.

In addition, Many websites do not include phone numbers. I could not contact employers for assistance. Due to these issues, I basically hit a dead end before I could even begin my search.

In spite of lots of good intentions, it is still hard for people with disabilities to get internship placements and employment.

 Alexandra Wang:  What first steps can be taken to improve this situation?

Sena Pottackal:  First, employers should conduct a thorough accessibility audit of their website and make changes to improve the disabled user experience. One easy way for organizations and employers that are serious about inclusion is to provide a phone number and email address, so offering an opportunity to connect applicants with disabilities to a human resources professional to help them complete the application.

Alexandra Wang:  How can internships and jobs promote accessibility?

Sena Pottackal: Accessibility and inclusion can be part of an organization’s mission statement and incorporated into everyday practice. Supervisors and other executives should be informed about mechanisms and technology that can be put in place for their interns and employees with disabilities.  October is Disability Employment Awareness Month.  Now is a great time to start this important conversation about disability with your colleagues.

Accessibility and inclusion can be part of an organization’s mission statement and incorporated into everyday practice.

OctoberImage courtesy Ability Building Hire

 Alexandra Wang: What are some of the options of assistive technology for blind people?

Sena Pottackal: Like most blind people, I use an iPhone.  It comes equipped with a built-in screenreader, called VoiceOver. Users simply need to activate it in their settings and, then, they can use it with email, Safari Reader, or any other application programmed to support screenreaders. Likewise, they can activate the dictation mode in their settings to utilize this speech-to-text function to transcribe messages and emails.

There are many other helpful free applications that are suitable.  The choice depend on the person and his or her needs, as well as the employer’s goals and needs.   Most importantly, employers should ask their employees with disabilities what they need in order to be successful and make positive contributions to the employer. In other words, just ask us for feedback.  We are the experts!  We will gladly tell you and work with you to ensure success for all concerned.

Alexandra Wang: How can more employers be persuaded to take steps to provide technology and other supports for employees with disabilities?

Sena Pottackal:  We live in a data-driven era. The data clearly demonstrates that disability inclusion drives innovation, improves productivity, and creates a better work environment. Employers must embrace best practices for disability inclusion. These include equipping disabled employees with adaptive technology, other helpful workplace accommodations, meaningful mentorship, and individual development plan for professional advancement. According to all the research findings, these investments in employees with disabilities pay off  in increased productivity and greater job satisfaction.

Accessibility  Ipedis

Image courtesy ebsco                          Image courtesy Ipedis

The data clearly demonstrates that disability inclusion drives innovation, improves productivity, and creates a better work environment.

 Alexandra Wang: What are some of the challenges faced by employers who are trying to furnish employees with disabilities with the correct equipment and work environment?

Sena Pottackal: Although employers genuinely seek to create an inclusive work environment, they sometimes, however, unknowingly purchase devices, create websites, and utilize offices that are not fully accessible to employees with disabilities. For example, I have encountered public spaces utilizing visually demanding touch screens and websites that are not accessible to screenreaders. I have also encountered meeting spaces utilizing a split-level layout that restrict access to people with mobility disabilities.

Access a mess                                    Image courtesy The New York Post

Alexandra Wang: What are the challenges that people with disabilities are facing in the workplace?

Sena Pottackal:  Transportation, transportation, transportation!!!  Navigating New York City can be an overwhelming experience even for people without a disability.  NYC offers door-to-door transportation for people with disabilities through a paratransit service, called Access-A-Ride. On the rare occasion when it actually works as intended, it is fabulous. However, more often than not, it is a hot mess.  Many people with disabilities half-jokingly refer to it as ‘Access-A-Mess.’

Alexandra Wang:  What are some of the less-than-wonderful experiences that you have had with Access-A-Mess?

Sena Pottackal:   I absolutely appreciate that this resource exists. During the past month, however, it has been consistently late to pick me up from work for at least half an hour.  Despite this, most of the drivers have been kind, compassionate, and receptive.

But one time, I had a horrible driver. On my way to work, he told me that we had arrived at my workplace.  I knew this could not be true because the traffic was going in the wrong direction. He insisted, “the building is right here,” while he gestured repeatedly. I explained to him that I did not know where “right here” was because I am blind.

He continued to disregard my explanation, so I had to spell it out for him. I told him that my eyes do not work like other people’s. I could not see what he was pointing to.  I needed more information, like what street we were on and, in what direction, our car was going. Eventually, I gave up the fight, exited the car, and obtained directions from a pedestrian who kindly guided me to my office.  Then, I had to recover, re-energize and refocus before starting my workday.

Alexandra Wang:  Is there a less messy alternative to Access-A-Mess?

Sena Pottackal:  Neither Lyft nor Uber is a fully accessible alternative for the blind. Both apps utilize safety features that depend on visual cues to locate your car, such as the color of the car, the license plate number, and the driver’s photo.  Some drivers also stop the car across the street or down the block.  For a blind person like me, it is truly challenging.

Alexandra Wang:  What can be done to improve the situation?

Sena Pottackal:  A transportation service like Access-A-Mess that provides services exclusively for people with disabilities should have basic training in accessibility for its drivers. Services should collaborate with passengers and use their feedback and opinions to make transportation truly accessible. This could be done as simple as asking passengers to fill out a questionnaire.

Uber and Lyft should expand the user profile by including an option to disclose a disability and request accommodations, such as picking up a passenger directly by the departure location. Lyft added a comment feature, so that I could inform the driver of my needs. Although this is a step in the right direction, it still requires me to re-enter the same information every time I request a ride. I hope Lyft and other ride sharing options would develop a more user-friendly application for passengers with disabilities.

Alexandra Wang: As a person with a disability planning on a career in media, what would you like to see in accessibility and inclusion in media?

Sena Pottackal: We perceive ourselves and make sense of the world around us through media. Currently, the representation of people with disabilities in media does not adequately or even accurately reflect our presence in society.

In the future, I hope to see more representation of people with disabilities in the media. Ideally, these representations will be crafted by people with disabilities who are able to portray disabilities accurately.  It will lead to the normalization of disability as an ordinary facet of the human experience.

I would love to see all video content made accessible to people with sensory disabilities through transcripts, closed captions, and audio description for the visually impaired.  In fact, as movies have become more available with audio description on iTunes, I have spent much of my money revisiting Disney movies from my childhood and finding new favorites.

Alexandra Wang:  What would you like to see about disabilities and inclusion in daily life?

Sena Pottackal:  Interaction is crucial to understanding disabilities. Schools should introduce children to people with disabilities, so that kids can ask questions and learn from them directly.

Additionally, schools should incorporate disability awareness into curricula. For example, exposure to sign language, Braille, video descriptions and closed captions can help students to understand how people with sensory disabilities obtain and convey information. Educators should assign books and films on historical, influential, and iconic people with disabilities.  There are countless examples of people with disabilities who have amazing accomplishments in various fields.

Interaction is crucial to understanding disabilities.

Alexandra Wang: What challenges did you face before pursuing higher education?  Which approaches have been helpful?

Sena Pottackal: Most of my teachers were supportive. I had, however, one teacher in high school who forced me to withdraw from her math class and switch to a less advanced one, because I could not read the board even though I was more than capable of doing the work. This was, in fact, a violation of my legal rights. I wish I had been better informed of my rights back then.

Another high school math teacher went above and beyond compliance with accommodations. She tutored me a week before the class, so that I had an extra week to learn and complete my assignments. I did not have to worry about my inability to read the board in this class. Her approach worked wonderfully. The New Jersey Commission of the Blind (NJCBVI) helped me by providing me with audio books, adaptive technology and training.

Alexandra Wang: How can school counselors help students with disabilities?

Sena Pottackal: School counselors should acknowledge disabilities, but maintain high expectations for all students. They should identify and facilitate alternative methods to help students with disabilities to achieve their goals. School counselors should encourage students that anyone can pursue higher education and have a satisfying and fulfilling career. They should assist students in finding career interests through a career assessment. School counselors should help students and parents to find support and opportunities available.

Alexandra Wang: You are currently pursuing a graduate degree.  What is the biggest challenge?

Sena Pottackal:  I did not know any other blind communications students or professionals when I started at community college. The lack of mentorship compelled me to figure things out myself through trial and countless errors from one semester to another.

Alexandra Wang: What would you say to a person with a disability who just started his or her academic career?

Sena Pottackal: Find a mentor!  I wish I could use the lessons that I learned from my mistakes to help others to succeed.  Keep in touch with your college’s Office of Student Disability Services. Join support groups. Most importantly, advocate for yourself. Remember, your accommodations are your legal rights. If you are met with resistance from professors when asking for accommodations, inform the Office of Student Disability Services and the Dean of Student Affairs. Make sure you have a record of your experiences with specific dates and detailed information.

I wish I could use the lessons that I learned from my mistakes to help others to succeed.

Alexandra Wang: What can be done to ensure that academia takes concrete steps to support students with disabilities to achieve their academic goals?

Sena Pottackal:  Most of my professors have been supportive. Some of them, however, were not familiar with accessibility rights and support mechanisms. I had to take the lead and become the educator in this area.

Like employers, schools are extremely focused on data, such as enrollment and graduation rates. Disability is part of those statistics. Students with disabilities compose one of the most quickly growing segments of the student population.  It is in the school’s own best interest to have students with disabilities successfully graduate. Educators and administrators must recognize the need for disability inclusion and accommodations. Lastly, requesting student feedback is always a winning strategy for everyone.

BlindImage courtesy New England Low Vision and Blindness

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