Connecting the world & creating awareness for those with disabilities.
Isabella Eisenmann
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• My Log •
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"Isabella opens her heart to share her story and to give readers a digital platform that facilitates the interaction between teenagers and adults that live with a sibling or relative that has a disability. This book will allow you to understand your feelings and emotions, how this situation affects you, how you react and who you can rely on. Its an excellent resource for self discovery and the overall therapeutic process."
– Licedys Rodríguez Sosa, Panamanian Psychologist with 18 years of experience - in approaching individual differences, of both children and teenagers.
"Talking to yourself is a complicated task; telling your body what you feel is easier said than done. We constantly strive to be independent and self-sufficient, but can we truly be emotionally self-sufficient? When we experience mental or emotional pain, it’s hard for us to elaborate or express ourselves. MyLog is a tool that will help you and your loved ones understand what you are going through, as well as understand what you are feeling and why you are feeling it. The tool will allow you to fall down, but also to pick yourself up every morning. MyLog will allow you to give meaning to your pain and to truly embrace happiness."
– Getza Barragán, Panamanian Clinical Psychologist & Integrative Therapist
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A SELF-HELP ACTIVITY JOURNAL FOR PEOPLE LIKE YOU, WITH A FAMILY MEMBER WITH A DISABILITY, TO HELP YOU MANAGE OVERWHELMING EMOTIONS AND BE HAPPY. Isabella Eisenmann
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Publisher’s Note This publication is designed to provide accurate and authorized information in regard to the subject matter covered. It is distributed with the understanding that the publisher is not engaged in rendering psychological, financial, legal, or other professional services. If expert assistance is needed, the services of a competent professional should be sought.
Design by Isabella Eisenmann Content by Isabella Eisenmann Edited by Marcos Cavassuto All Rights Reserved. Paperback First Edition, 2016 Printed by Blurb in the United States of America App code: mylogbook16
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To Patricia, Roberto III & Roberto IV, who taught me how to love unconditionally.
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Contents
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Acknowledgments
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Introduction
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Chapter One Let’s talk about the basics
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Chapter Two Unconditional love and acceptance
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Chapter Three Emotional intervention
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Chapter Four Impact of disabilities
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Chapter Five Coping with loss
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Chapter Six This might bring you all together
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Chapter Seven Bottom Line
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Testimonies
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Glossary
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References
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Acknowledgements
This book grew from the people whom I am fortunate to call my family. It has been my all time dream to share our life experience with the world and to connect with all the families out there who go through situations similar to ours. Specially, I wish to help others have less of a struggle dealing with situations such as ours. To my brother, Roberto, who is my main inspiration in life. Every single day he teaches us that impossible is nothing and that with patience and hard work you can get to places that you would of never imagined. To my parents, Patricia & Roberto, who have been the best role models and parents I could have ever asked for. Since the moment my brother was born, they turned into heroes and gave their all to give my brother the best possible life and opportunities to succeed. To Marcos, who in the past three years has been the best friend and confidant I could have asked for. Thank you for listening to me, for loving my brother and for treating him like your very own family member.
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• Introduction •
Introduction
If you are reading this right now, you probably have a family member with a type of disability. Whether you purchased the book or someone gave it to you, this is already a step forward; a healing self-help process, in which you will discover things about yourself, discover hidden feelings, get educated on some topics, learn to bond with this family member and learn to acknowledge this “issue” and turn it into a beautiful aspect of your life. Most importantly, you will learn that having someone close to you with a type of disability is a blessing and this will turn you into a better person. You will turn into an understanding, patient and appreciative person. You will learn to value the little things in life and the small steps the person takes each day. I spent all my childhood living in psychologists' offices trying to deal with these issues, but I think there is a better way to do it. In my case it is my little brother who has a disability. Trust me, this will be a better and funner way to overcome these "issues". Sometimes I felt overwhelmed by the therapists’ questions, confused or even bored of the same questions. At other times I felt like being alone and talking to no one but myself. This book will be the perfect mix, I promise! You will get a chance to learn at your own pace, get educated, let go of your feelings and fears and even get to bond with this person. We will start talking about the importance of what a disability is. We will walk through the meaning of the word and how the term is blurred. You might be thinking that you already know what it is and that it seems ridiculous to even spend a chapter talking about it, but trust me, you will learn new things. Every single person has a type of disability, no one is perfect. Not having perfect vision, for example, is a disability too. See? Almost everyone, if not everyone, has a disability one way or another. The second chapter is about unconditional love and acceptance. You will read about Andrew Solomon’s view on this topic and will find that with unconditional love people with disabilities can reach levels that are probably never thought possible. Love is the most
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powerful feeling one can have and people with disabilities deserve that and more. The most important thing is that they deserve to be treated equally. For example, you will learn how disabilities "vary along several dimensions, including the degree and type of incapacitation and how different experiences some can have rather than others. In some cases, the conditions that are noticeable to the naked eye, are believed to be fake or exaggerated. People expect some sort of proof that they are telling the truth; when in other cases when they are physically noticeable, people are treated with advantages to help them have an easier time." The impact disabilities have on the lives of the family members is huge. In this book you will learn about how it impacts the family members and the extended family members as well. This chapter will also touch upon topics such as financial burden the family will encounter and the decision making on whether the person should live independently. Talking about the condition with other people is also a big and very important topic that you will learn about here. The hardest topic I wrote was the one on how to cope with the loss of these people with disabilities. I am a strong believer that we all come to this world with a set of goals and things to do; some people come for a shorter time and others are here to stay a little bit longer. We have to learn to celebrate the life of those who leave before us. It is a scary topic to talk about, but very necessary to understand. Not one person will leave this world alive, this is one of the things that we are all scared of but can't do anything about. When these things happen we might feel lost, empty or scared and it is completely normal. I am hopeful that you will finish the chapter and be a little more open about it. Lastly, I will tell you about how this will bring you all together or break you. Because it is extremely important that you are ok with yourself before you help others, you must pay attention while reading this chapter. Group work and an open mind are crucial. Hopefully after reading all of the other chapters, you will be ready for this one. At the end of reading this book, the goal is for you to be at ease with your feelings and thoughts. So, I applaud you for taking this initial step. Taking this initial and crucial step towards accepting and embracing this life challenge will prepare you for the next most important one, which is strengthening and reinforcing the family bond. The entire process in which your family copes with this will be a difficult one, but rest assured it will be totally worth it. You will read, learn, write and be creative with the activities that the book has for you. Give it your all and make it yours. Remember that this is your space, take advantage of it because no one is here to judge!
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• Introduction •
Activity Welcome to the first activity. Before we start, you will write a little bit about yourself and about your initial thoughts and reactions. Fill in the following lines. Name: Age: Nationality: Family member type: Number of siblings: Disability your family member has:
Birth date: Gender:
Reasons why you are reading this book:
Initial reaction of the book:
What you hope you learn after reading the book is:
What you know so far about the disability your family member has:
From 1 to 10, how bad is the situation at home (10 being the worst):
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Chapter One
Let’s talk about the basics
I want to start with the basics. The reason you found yourself interested in this book and purchased it is because you are connected to someone who has a disability. But, what is a disability? This word is so mainstream and so commonly used, that the real meaning of it has been blurred or misrepresented with time. There are countless types of disabilities which are visible to the naked eye and thus ignored. It is through my own experience that people tend to ignore disabilities that are not visible or immediately identifiable. Activity So let me ask you this, in your own words, what is a disability? Fill out the empty lines.
Disability defined. According to a trustworthy source, the word disability is defined as “a physical or neurological condition that limits a person’s movements, senses, or activities” and some synonyms for it are handicap, disablement, impairment, infirmity, defect, abnormality, condition, disorder and affliction. As you probably already realized, the word “disability” encompasses a wide variety of cases and situations. You might be thinking about many other people you know that also have a type of disability and you had never even thought about it. Anything that causes a person to be limited somehow, is a disability. That’s the beauty of life, every single person has a type of disability, simply some have it a lot harder than others. So, was your answer you wrote above correct or close enough to the definition?
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I stumbled upon an organization called WHO or World Health Organization and found its way of explaining what a disability is. The organization does so beautifully. To them a “disability is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations”. “Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers. People with disabilities have the same health needs as non-disabled people. They also may experience a narrower margin of health, both because of poverty and social exclusion, and also because they may be vulnerable to secondary conditions, such as pressure sores or urinary tract infections. Evidence suggests that people with disabilities face barriers in accessing the health and rehabilitation services they need in many settings”. And it is indeed a complex phenomenon which none of us will ever escape from. Whether you have a family member born with one or as you grow old, you will inevitably be related to someone with a disability or even yourself. Being comprehensive and understanding is paramount because one day it could even be you and what you would love to see is others giving you a hand instead turning their back on you and your family. Activity Mention people directly related to you that live with a type of disability. Name What their disability is
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• Let’s talk about the basics •
Education & employment; Inclusion for all. This is part of inclusion into society we just talked about. UNESCO researched how many children with disabilities in developing countries are not attending school and the organization found that the total is shocking. UNESCO found that 90% don't go to school. This lead to researching about "global literacy rate for adults with disabilities" which UNESCO found to be "as low as 3 per cent, according to a 1998 UNDP study". This is absurd. In some extreme cases, it is understandable that some people with disabilities don't have the ability to go to school and get educated, but in other cases they are totally capable of doing so with some adaptations here and there. Parents have to push this because although the children won't be learning at the same rate the other children are, at least they are out of the house exposed to another environment and exposed to children their age. This will help them become more social and perhaps learn more skills. In the United States, inclusion to society is a topic which is extremely advanced compared to how it is in other countries. In Latin America, we are way behind. We do not have dedicated schools for children with disabilities and I can count with one hand the schools that are willing to accommodate the needs of children with disabilities. It is a sad reality. In our experience, when we started going to The Institutes in Philadelphia, the doctors felt strongly about not sending these kids, like my brother, to school. They said it was a waste of money and time because those places would not do him any good. My mother followed everything they told her except for that. She had a complete different opinion and thought that a place like that would be the best therapy in the world. My brother started school a year after he was supposed to in a school called Panamerican School in Panama City, Panama. He has been going since pre-k with his tutor and companion, Indira. She wears the same uniform all the school teachers wear and goes with him to class. Every single thing he learns in school is adapted to his capabilities or learning. They try to talk to him about similar things which are being talked about in class with the rest of the classmates. He has a shorter schedule than his classmates because he goes until noon because of his ongoing therapies at home after lunch. After 14 years, he is now graduating high school this December 2016 and we could not be any prouder. This was the best decision ever. Job opportunities reflect the same story. Many places won't accept people with disabilities, but every day more and more places do. Unemployment among people with disabilities is as high as 80% in some countries (ILO). This happens because employers assume that people with disabilities are unable to work. I beg to differ. "A 2004 US survey found that only 35% of working-age people with disabilities are in fact working, compared to 78% of those without disabilities" (IDRM). Thousands of people with some sort of disability have been as "successful as small business owners" according to the U.S. Department of Labor. We have to understand that these people are just like us, but
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Connecting the world & creating awareness for those with disabilities.
Isabella Eisenmann Isabella Eisenmann was born and raised in Panama City, Panama. In 2016 she graduated as a Graphic Designer from Massachusetts College of Art and Design in Boston, MA. For her senior degree project she chose to write and design this book. She shares her life experience and knowledge as a sister of a special needs boy. Eisenmann wishes to connect the world and create awareness for those with disabilities. MyLog is a service to create awareness in regards to any type of disability. This service will give the families a medium to express their feelings, let go of their fears, educate themselves and connect with others who are going through the similar situations. It is meant for immediate family members and relatives of people with disabilities.
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