Give Me a Chance: A Primer Advocating for People with Disabilities

Copyright © 2020 Janis Gilbert.

You can contact the author at Givemeachance-disabilities.com

All rights reserved. No part of this book may be used or reproduced by any means,

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except in the case of brief quotations embodied in critical articles and reviews.

This book is a work of non-fiction. Unless otherwise noted, the author

and the publisher make no explicit guarantees as to the accuracy of

the information contained in this book and in some cases, names of

people and places have been altered to protect their privacy.

Archway Publishing

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Because of the dynamic nature of the Internet, any web addresses or links contained in

this book may have changed since publication and may no longer be valid. The views

expressed in this work are solely those of the author and do not necessarily reflect the

views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Getty Images are

models, and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

Interior Image Credit: Tom Gilbert, Janis Gilbert

ISBN: 978-1-4808-9593-5 (sc)

ISBN: 978-1-4808-9592-8 (hc)

ISBN: 978-1-4808-9594-2 (e)

Library of Congress Control Number: 2020917498

Archway Publishing rev. date: 11/13/2020

CONTENTS

Acknowledgments

Introduction

Chapter 1     What Is a Disability?

Chapter 2     Disabilities–Born or Acquired

Chapter 3     Co-Morbid Conditions

Chapter 4     Some Statistics

Chapter 5     Disabilities–No Respecter of Persons

Chapter 6     Movies Portraying People with Disabilities

Chapter 7     Disabilities in History

A First Look at Punishment versus Treatment

The Influence of Industrialization

The Effects of Two World Wars

The Dark History of Experimentation

Embracing Disabilities

Chapter 8     Changes in the Disability Treatment Landscape

Americans with Disabilities Act of 1990 (ADA)

The Landscape Today

Chapter 9     Opportunities to Minimize Disabilities During Pregnancy

Chapter 10   The Brain and the Role It Plays in Disabilities

Executive Brain Functioning

Traumatic Brain Injury

Chronic Organic Brain Syndrome

New Research

Chapter 11   Diagnosing Children

Chapter 12   Diagnosing Disabilities

Chapter 13   Medication vs. No Medication and/or Self-Medication

Medication as a Part of Treatment

Self-Medication

Chapter 14   Acceptance of the Disability

Chapter 15   Services Available

Support Brokers

Division of Vocational Rehabilitation (DVR)

Chapter 16   Shortages of Mental Health Providers, Community Services, and Funding

Psychiatrist Shortage

Shortages in Other Services and Supports

Chapter 17   Non-Medical Therapies

Animal Therapy

Art Therapy

Music Therapy

Mindfulness Meditation

Yoga

Chapter 18   Players, Procedures, and Protocols That Will Drive You Crazy

Medication Management (or the Medication Refill from Hell)

Privacy and Permission Nightmares

Other Frustrating Issues

Chapter 19   Advocacy

Chapter 20   The Realities of Every Day Life

Chapter 21   Respite—So Important But Often Illusory

Chapter 22   Taking Care of the Caregiver

Chapter 23   Disabilities in the Educational Realm

Federal Legislation Overview

Section 504 of the Rehabilitation Act of 1973

IDEA

Evaluations

The Individualized Educational Program (IEP)

Related Services

Specific Learning Disabilities

Transfers Between School Districts

Discipline

Transition from High School

Life After High School

A Final Note of Concern

Chapter 24   Social Situations

Chapter 25   Employment of Other Abled

Chapter 26   Housing

Chapter 27   Transportation

Paratransit

Over-the-Road Buses

Amtrak

Air Travel

Chapter 28   Sex and Other Fun Stuff

Chapter 29   SSI/SSDI

Chapter 30   Grassroots Groups and Support Organizations

Chapter 31   Special Needs Trusts

Chapter 32   Jails and Prisons as Institutions for the Disabled

The Overall Picture of Incarceration in the US

Children in Adult Prisons

Women

Developmental Disabilities

Mental Illness

Smart on Crime vs. Soft on Crime

Prison in Other Western Countries

Institutionalization

Chapter 33   Death and Dying

Chapter 34   Concluding Thoughts

No Wonder We Have Grey Hair

Unsung Heros

Bibliography

ACKNOWLEDGMENTS

I want to thank my two sons, Eric, and Aaron, and my daughter-in-law, Natasha, for allowing me to utilize experiences from their lives as illustrations and for giving me the encouragement to write this book.

Thank you also goes out to my husband, Tom, for his editing and reference expertise on this manuscript and helping with pictures.

Thank you to all of the people with disabilities for your perseverance and in a lot of cases, paving the way for others in your effort toward self-actualization.

INTRODUCTION

Mom, the other kids are picking on me again, complained our older son, Eric, during elementary and middle school years. This was a repeated refrain from him reflecting typical interactions with his peers, especially since he was one of the smallest boys in his middle school.

Growing up with a disability is tough. It is tough for the child, the parents, his/her siblings, and for the child’s teacher and classmates. Every person, disabled or not, wants to be happy, loved, and respected. They want to be accepted. They want to accomplish their dreams. Parents also want these very same things for their child.

In his article entitled A Theory of Motivation from which we get Hierarchy of Needs (1943)¹, noted psychologist Abraham Maslow wrote that the basic needs of each individual for food, clothing, and shelter must be satisfied first. Only after these basic needs are met, can an individual go on to other hierarchical needs such as safety and security, then love and belonging, self-esteem, and finally self-actualization (achieving one’s full personal potential). Once the initial needs are met we can all make strides in maximizing our abilities.

People with disabilities or special needs have hopes and dreams just like everyone else. They need safety, security, love, and belonging. They want to feel good about themselves and accomplish things in life. They might not be able to make all of their dreams come true, but they still have those dreams. They want their life to have meaning. People with disabilities sometimes need others to give voice to their hopes and desires and to help them achieve some of their goals.

People with disabilities are people first. They are not their disability; it does not define them. They want to be given a chance to accomplish as much as they can. Many of them accomplish a great deal in spite of their challenges.

People with disabilities are frequently considered outside the norm and consequently face marginalization, isolation, loneliness, discrimination, and sometimes abuse. They are pitied, ignored, excluded, stereotyped, and scapegoated. People tend to be afraid of what they do not understand and most people do not understand physical and mental disabilities. Some may even fear that they could acquire a disability from someone who is disabled. Wider education and understanding about disabilities could help change public attitudes toward people with disabilities enabling them to feel more included in our society.

My life experiences have given me many opportunities to learn about mental health disabilities. For the first 16 years of my marriage, my husband and I struggled with his undiagnosed clinical depression. During that time, we adopted our first son, Eric, placed with us when he was 10 days old. When he entered school, the structure of that setting immediately surfaced some challenges. He was diagnosed with Attention Deficit-Hyperactivity Disorder (ADHD). However, as he moved into middle and high school, another diagnosis became clear—Asperger’s Syndrome, or Autism Spectrum Disorder. This challenge impacts his life in significant ways and ours too.

When Eric was 10, we adopted a 6-year-old boy named Aaron. He carried a diagnosis of ADHD, which we felt confident we could handle. There was some suggestion that he might have been affected by fetal alcohol. As he progressed in school, the increasing challenges of learning and social adjustment revealed how pervasively he is affected by Fetal Alcohol Spectrum Disorder. He has almost no Executive Brain Function and makes very poor decisions. This has resulted in extensive involvement in the criminal justice system.

While we were welcoming Aaron into our family, I decided to return to school full-time (while still working full-time) to earn a Master’s Degree in Special Education. Subsequent to completion of my degree, I taught special education in an urban high school.

I have learned a lot about disabilities through these experiences. I continue to learn how amazing people with disabilities are (just like everyone else) and how creatively they face and manage their challenges.

I have written this book to share what I have learned. It begins with an overview of disabilities, defining what they are, how they are acquired, that two or more disabilities frequently occur together, and some statistics about disabilities in the United States. We take a look at well-known people who have various disabilities and how disabilities have been portrayed in popular culture through movies. The book covers the history of treatment of people with disabilities and how this has changed over the years. It examines diagnosis and treatment of disabilities and challenges associated with this work, including shortages of resources. There are sections looking at aspects of life for people with disabilities including family and social relationships, education, employment, transportation, housing, and others. Chapters discuss caregiving, advocacy, community support services through governmental and nonprofit agencies, and planning for the time when parental caregivers are gone.

Throughout the book I have included personal and professional experiences from our family life. This material is followed by a section of personal stories written by people whose families have been touched by disabilities.

My hope is that after reading this book, you will have a better understanding of disabilities and the many complex issues that people with disabilities and their caregivers face every day and how we can all make accommodations to make a person’s life better and more fulfilling.

This book is designed for parents and teachers but may be useful to individuals with disabilities and people who want to learn more about disabilities and have a better appreciation of both the challenges and the victories of living with a disability. To profit from this book, you do not have to read it straight through as you would a novel. The chapters are arranged so that you can pick the subject areas most relevant to you at the time.

It is truly amazing that in the third decade of the twenty-first century there is still a stigma associated with having a mental illness, even though approximately 26 percent of the U.S. population over the age of 18 years has a diagnosable mental illness. While federal and state legislation, such as the American’s With Disabilities Act, has enshrined in law the rights of people with disabilities, they still seek the honoring of those rights by people in their everyday lives. They want to be given a chance.

People with disabilities may sometimes feel angry, sad, depressed, afraid, frustrated, confused, helpless, inadequate, embarrassed, ashamed, odd, anxious, and numb. They may have painful memories and emotions from experiences that can lead to alienation, loss of friends, and other symptoms. It is important for them to have coping strategies and a circle of supportive people on whom they can call when they are experiencing these feelings.

Studies show that people who are born with disabilities tend to be better adjusted to their situation than people whose disabilities arrive later in life. Like a pebble tossed into a pond sends out ripples, having a disability affects widening circles of family, friends, and colleagues. This is true whether the disability is physical, mental, or behavioral, such as alcoholism, eating disorders, drug abuse, or other addictions.

People with disabilities sometimes act strangely, sometimes violently. This behavior causes people unfamiliar with how disabilities manifest themselves to become uncomfortable and even fearful. Consequently, if this behavior occurs in the public arena, the police may be called. Many police officers lack understanding about the best way to deal with someone having a mental health crisis, although more departments are beginning to have specially trained mental health officers and crisis intervention training for all officers. Still individuals experiencing a mental health crisis are frequently arrested, charged with a crime, and enter the criminal justice system. I know from personal family experience.

Other times a mental health crisis ends more tragically. In the past couple of years nationally as well as in our community, lethal force has been used against people with known mental health conditions. Sometimes the lethal force has been used simply because the person did not obey the commands of the police officers. Mentally ill people have difficulty comprehending and complying with such commands when they are in emotional crises. (If parents killed their children every time the kids did not obey a directive, our population would be decimated!!)

It is also true, however, that in this same period persons who have mental illness have carried out deadly attacks on persons known and unknown to them. Because of a lack of treatment options and resources, earlier intervention did not occur and police are left to be the intervenors at the crisis stage. It is a sad commentary on the priorities of our society that we have not moved to better solutions for these issues. From one perspective, it is a good outcome when police intervention prevents people in mental health crises from causing any harm and only ends up in their incarceration.

Law enforcement professionals admit that our jails and prisons have become de facto mental health institutions. In jail and prison, people with mental illnesses experience more discrimination and ill treatment at the hands of both inmates and facility staff. Medical staffs working in jails and prisons frequently alter the medications from what the people had been prescribed by their own psychiatrist. Partly this is because jails and prisons have difficulty accessing patient medical records on the outside. It is also because jails and prisons have their own drug formularies of preferred medications in order to manage their operating costs.

In the Wisconsin prison system, it is standard practice to strip all incoming prisoners of their psychotropic medications cold turkey and then observe them to determine if they really need the medication(s). Again, I have firsthand experience with this practice in my own family. I have also heard this directly from other inmates. There are two things wrong with this approach: 1) the medical staff does not know the individual well enough to make a judgment call regarding discontinued medication prescribed by his regular psychiatrist, and 2) psychotropic medication should be tapered, not cut off cold turkey. This action frequently sets the person up to commit some infraction of institution rules or another crime, resulting in sanctions or more charges.

Does this make any sense? Where is the justification for the actions taken against these individuals with disabilities? Where is the justification for this kind of inhumane treatment to any individual? It almost seems like people with disabilities are merely subjects on which to experiment. Unfortunately, such experimentation has happened before. Read on.

CHAPTER 1

WHAT IS A DISABILITY?

What is a disability and why do we tend to become uncomfortable around a person with a disability? Disabilities come in all shapes and sizes. They can be physical or mental. Dictionaries define disabilities as lack of adequate power, strength, or physical or mental ability, or incapacity. They can be conditions that limit movement, senses, or activities, especially things that limit people’s basic life skills or prevent them from holding gainful jobs. They are conditions that disable or put people at a disadvantage.

A person with a disability can be anyone having a physical impairment such as hearing or sight loss, limb problems, cognitive impairment, learning impairment, mental health issues, HIV positive status, or hidden impairments and long term health conditions that progressively worsen, such as multiple sclerosis. This includes everyone who identifies as needing the support of an organization in order to remove a barrier that may have excluded them from participating in the economic, social or political life of their communities (see Chapter 8, Changes in Disability Treatment Landscape).

A chronic illness is defined as any ongoing illness from which one does not heal. People with chronic illnesses can experience lots of pain and distress, or have limits and circumstances brought on by the illness, resulting in disability. People who suffer from a great deal of pain can have problems sitting, walking, standing, or lying for example. They may also have a great deal of trouble concentrating due to the pain.

It is not uncommon for people with mental health or other issues to deny that there is any kind of a problem, even though those around them can see that there is a problem, and that professional help should be sought. Denial can be part of a disability or illness, or it can be fear of going to doctors and receiving a diagnosis.

People with disabilities, especially those with mental illness can have challenging behaviors at times. People may shy away from someone with a disability because they are afraid of what they do not understand. Earlier in history, people feared that disabilities were catching. (Today there is the witticism, Mental illness is contagious; you get it from your kids!)

My older son sometimes forgets to take his medications. When he does, he can become angry and belligerent. A family member told me about a neighbor with bi-polar disorder who was chasing his mother and wife around the neighborhood with a knife because he had not taken his medication. My relative described how scary that was. Yes, episodes like that can be scary, but to those of us who deal every day with a person with mental health issues such behaviors are usually just annoying. Most of the time we are not scared but rather annoyed that a confrontational situation is happening yet again that we were not able to quickly diffuse by redirecting the person.

CHAPTER 2

DISABILITIES–BORN

OR ACQUIRED

A person can be born with a disability or acquire one during life. Cerebral palsy, cystic fibrosis, autism, limb deformities and heart deformities are just a few of the disabilities with which a person can be born. Diseases such as sickle cell anemia or Huntington’s disease are genetically-based maladies that can manifest early in life. A person can have a genetic propensity to alcoholism, schizophrenia, breast cancer, or obesity that develops later in life.

Diseases acquired later in life can result in an individual losing the ability to think, walk, see, or hear, which can become disabilities. These diseases include Alzheimer disease or dementia, Parkinson’s disease, multiple sclerosis, diabetes, and years ago, measles, mumps, and polio.

Less than 15 percent of people are born with disabilities. Most disabilities come later in life. There are hundreds of different kinds of disabilities. A perfectly healthy individual can be involved in some type of accident–vehicle, skiing, biking, swimming, to name a few and end up with a traumatic brain injury, spinal cord injury, broken bones, and so on. In addition to healing the physical injury, there can be many months of intense rehabilitation to learn how to walk and talk again. Sometimes getting the brain’s neurological paths to connect the right word with the correct object or concept can be extremely frustrating, exhausting, and even disheartening.

Armed conflict and violence such as wars produce many disabilities. Many soldiers have come back from war with every conceivable form of physical and mental disability. More and more they are also coming back with post-traumatic stress disorder (PTSD-called shell shock in World War I and battle fatigue in World War II). War has produced new illnesses such as Gulf War syndrome which affects a person’s ability to feel well and productive. Workers at Ground Zero in New York City not only experienced respiratory illnesses but also PTSD.

PTSD can stem from traumatic incidents such as muggings, rapes, and torture; kidnappings and being held captive; child abuse; car accidents; train wrecks; plane crashes; bombings; and natural disasters such as floods, hurricanes, tornadoes, earthquakes, and tsunamis. It can also result from discovering or being on the scene of such tragedies. The majority of people exposed to such events experience symptoms of distress such as sleep problems and jumpiness. Suddenly, life is turned upside down.

People with PTSD may become emotionally numb, especially in relation to people with whom they used to be close. They may lose interest in things they used to enjoy. They may have an exaggerated startle response, be irritable, become aggressive, have trouble falling asleep and staying asleep, or have nightmares. They may avoid situations that remind them of the original incident and often find anniversaries of the incident to be very difficult.

PTSD symptoms seem to be worse if they were triggered deliberately by another person, as in a mugging or rape. Most PTSD sufferers repeatedly relive the trauma in their thoughts during the day and in nightmares when they sleep. These are called flashbacks. Flashbacks may consist of images, sounds, smells, or feelings. They are often triggered by ordinary occurrences, such as a door slamming, a car backfiring, or being in a place that looks like the setting where the trauma occurred. A person having a flashback is likely to feel the emotions and physical feelings that occurred during the incident despite no longer being in danger.

Post-traumatic stress disorder did not become a formal diagnosis until 1980. Effective treatments weren’t widely available until the 1990s.

Illnesses like cancer, heart disease, multiple sclerosis, arthritis, and diabetes cause the majority of long-term disabilities. Back pain and injuries are also significant causes. Most are not work related and therefore, not covered by workers’ compensation. Lifestyle choices and personal behavior that lead to obesity are becoming major contributing factors. Musculoskeletal disorders are the number one cause of disabilities. These include arthritis, back pain, spine and joint disorders, and fibromyalgia (chronic inflammation of a muscle with an overgrowth of the connective tissue).

Many other maladies are also being called disabilities such as obesity, alcoholism, drug addiction, gambling, compulsive eating, anorexia, and video-game addiction. Recent gene experiments have revealed that a faulty version of the FTO gene causes energy from food to be stored as fat rather than burned leading to some forms of obesity. The latest research has suggested that addiction affects different parts of the brain and causes a person to have highs and cravings. While the DSM V (American Psychiatric Association Diagnostic and Statistics Manual–Fifth Version) does not list some of these as mental health disorders, they are listed as possible suggestions for future research and inclusion in future editions of the manual.

As another section of this book highlights, disability is no respecter of people. Disabilities can affect any race, gender, or socio-economic group. In 2011, US Representative Gabrielle Giffords from Arizona was fine one minute and fighting for her life the next, with months and years of rehabilitation ahead. In 2010, an army psychiatrist at Fort Bragg went on a shooting rampage killing several people and injuring countless others. What was Dr. Nidal Malik Hasan’s state of mind or mental condition? A psychiatrist mother killed her adolescent son and then herself leaving a note stating school–can’t deal with school system and debt is bleeding me; strangled by debt. Anyone can get to a breaking point or be susceptible to outside influences, causing erratic behavior and perhaps violence.

While alcoholism and prescription drug abuse may be disabilities, they can also be accidents waiting to happen. One person’s disability can lead to another person’s disability when a drug-or alcohol-impaired person drives and crashes into someone. This happened to some friends of mine, as you will read about later.

Because most disabilities occur later in life, they can cause total paradigm shifts. Family dynamics shift, maybe from one adult being the bread winner to another family member now having to assume that as a primary responsibility. That person may or may not have been employed before, but suddenly it is imperative for him or her to be the primary wage or salary earner. If there are children, then the responsibilities change there too. Perhaps responsibility for primary care of the children is given to the person with the disability; maybe the children, depending upon their ages, take on more responsibility in the household; or if children are very young, the family may have to go on disability so someone is around to take care of the children as well as the disabled parent. The same is true in a single-parent household.

There is a paradigm shift at work also, if the person can still work. Perhaps he or she can only do part of a previous job or maybe none of it and needs a different position. This puts more stress on everyone as co-workers take on additional work, at least initially.

Disabilities occurring later in life can also challenge friendships. People may not know how to respond to the person with the disability or perhaps a friendship was based upon mutual participation in a physical activity like golfing or bowling, and the disabled person can no longer participate in that sport.

Canadian writer, J. Bickenback, states that disability is actually a fluid and continuous condition which has no boundaries but which is, in fact, the essence of the human condition. As a condition which is experienced by us all at some stage in our lives, disability is actually normal. If we are not born with a disability, as we go through life we might acquire a disease, have an accident, or develop a disability in the normal aging process, thereby making it a normal part of life. Western society’s social mores, however, do not view it as normal.

We can minimize disabling accidents by thinking an activity through and visualizing an event to its logical conclusion. An example would be jumping or diving into water of unknown depth. If we visualize various scenarios of positive (nice dive, swimming up to surface) and injurious outcomes (dive into too shallow water, hit head, and break neck), we can make better decisions, regulate our behavior, and not take unnecessary risks that could end in disaster.

Sometimes we take unwise risks because of normalcy bias—a mental state people enter when facing a disaster. It is a coping mechanism that occurs when we are trying to comprehend a traumatic event or impending disaster. It causes people to underestimate both the possibility of disaster occurring and its possible effects, so they inadequately prepare for it. Even the government has fallen victim to this phenomenon. Inadequate government and citizen preparation for Hurricane Katrina and the denial that the levees in New Orleans could fail was an example of normalcy bias, resulting in thousands of people refusing to evacuate. The denial of the severity of the 2020 coronavirus (COVID-19) pandemic by a large segment of our society is another example of normalcy bias, despite the statistics showing millions of infections and hundreds of thousands of deaths. The belief that the pandemic is a hoax, that the numbers have been inflated for political reasons, and the refusal to take simple measures like wearing a mask is evidence of this bias.

A disability will change your life in many ways. Family member’s roles and responsibilities may need to change. Raising children might become more challenging. There will be medical decisions and considerations. There may be a need for home accessibility modifications and adaptive equipment. Often this is not covered by insurance, creating financial pressures on the family. Your new reality may seem like a foreign world for which you are totally unprepared.

Whether a person is born with a disability or acquires one later in life, whether that disability requires minor or major adjustments in life, he or she will still desire safety, security, acceptance, and love in their life.

CHAPTER 3

CO-MORBID

CONDITIONS

When people have more than one disease or disabling condition, they are said to have co-morbid conditions. Each condition could stand alone for diagnosis and treatment. Examples of co-morbid conditions are respiratory illness and post-traumatic stress disorder suffered by World Trade Center rescue workers, a psychiatric disorder coupled with substance abuse, attention deficit hyperactivity disorder and Tourette’s syndrome, autism and anxiety or gastrointestinal issues, blindness and non-circadian rhythm, and depression accompanied by obsessive-compulsive disorder. A person may have a traumatic brain injury and physical mobility issues. Depression and post-traumatic stress disorder frequently go hand in hand. Children and adolescents with bi-polar disorder almost always have another co-morbid condition.

The more co-morbid conditions a person has, the more complicated and challenging life can be. Frequently, when medication works for one of the conditions, it does not work for the other, or it causes unbearable side-effects for the co-morbid condition(s). This proves to be a challenge for the physician trying to find a good combination of medications that will address all issues satisfactorily and not cause unacceptable side-effects.

Most clinicians and researchers agree that a combination of medication and therapy will lead to the best outcomes for people, whether they have a single condition or co-morbid conditions. While medication is working to stabilize a person’s mental, emotional, or physical health, an experienced therapist helps the individual learn strategies to live a satisfying life as well as to advocate for themselves.

CHAPTER 4

SOME STATISTICS

People with disabilities make up a surprisingly large portion of our nation’s population. There are approximately 49 million people in the U.S. that are disabled. That is over 19 percent of the population. Any of us can become a member of this group at any time. More than 50 percent of disabled Americans are in their working years, ages 18-64.

• Disability directly or indirectly affects nearly one out of every two adult Americans.

• Less than 15 percent of people with disabilities are born with their disability.

• One third of disabled Americans are 65 or older.

• Of the almost 70 million families in the United States, more than 20 million have at least one family member with a disability.

• Cognitive, physical, and mental health disabilities affect approximately 20% of North Americans of all races, ages, and genders.

• Between 1990 and 2000, the number of Americans with disabilities increased 25%.

• Approximately 90 percent of acquired disabilities are caused by illness rather than accidents.

• The link between poverty and disability is strong and goes in both directions. Poverty causes disability through malnutrition, poor health care, poor sanitation, lack of fresh clean water, and dangerous living conditions. Disability can cause poverty by preventing the full participation of the disabled person in the economic and social life of their communities, especially if the proper supports and accommodations are not available.

• The EEOC (Equal Employment Opportunity Commission) projects productivity gains of $164 million from the ADA