A Speech by Ruth Sienkiewicz-Mercer, May 1998
Good evening, everyone! It's a pleasure to be here with you all today and to have this opportunity to speak with you. Let me begin with a brief history of my life. I was born without complications on September 23, 1950, in Northampton, Massachusetts. When I was five weeks old, I developed a very high fever. I was diagnosed with viral encephalitis and spent three weeks in the hospital for treatment. My recovery seemed complete, so I was sent home. My parents became concerned when, at the age of thirteen months, I had not begun sitting up or talking. They took me to the Boston Floating Hospital, where doctors determined that I had cerebral palsy, probably as a result of the high fever. At that time it seemed that with a lot of hard work and therapy, I would walk and talk "normally" some day. Mom and I worked together to make this dream a reality, but she began to develop a bad back. Finally, Mom could no longer take care of me. We had to find another way.
The State School in Lakeville, Massachusetts had a good reputation for its work with children with developmental disabilities. My parents sent me there when I was five years old. A newly graduated psychologist at Lakeville performed “intelligence tests” on me, despite the fact that he didn't know how to communicate with me. He determined that I was an unteachable imbecile. This diagnosis proved to be disastrous to me. It meant that I was not only denied admission to Lakeville, but that I would be overlooked later on. At any rate, because of his conclusions, I was promptly sent home to my family.
My parents and I didn't give up. A few months after my rejection from Lakeville, I entered the Crotched Mountain Rehabilitation Center in Greenfield, New Hampshire. I spent four wonderful, happy years there. I was forced to leave when my financial resources dried up. I was bored at home and yearned for the stimulation I had received at Crotched Mountain. The boredom proved to be too much, and we began to look around for another place for me.
A couple of years after my departure from Crotched Mountain, my parents visited the Belchertown State School at Belchertown, Massachusetts, and reported to me that, while it wasn't as good
as Crotched Mountain, they thought the State School would be all right. In May of 1962, at the age of eleven, I began my sixteen year jail term there. Many of those years were spent in virtual isolation. Even though there were many people around me, no one tried to communicate with me. Finally an attendant named Lydia Weston, Wessie for short, noticed that I laughed when she made a joke, and that my facial expressions had meaning. Her simple observation proved to be a real turning point in my life, because that day was the day that people began to speak to me and to work with me on my communication skills. The increased human contact made my final five years at Belchertown a little more bearable, although it still wasn't a picnic.
Finally on June 30, 1978, I was picked up along with several others, by a van complete with a motorized wheelchair lift, which was provided by Shelton's Inc., a private service provider, and was taken to my new home at Linden Towers in Springfield, Massachusetts, away from the nightmares and scars of Belchertown State School. That was one of the happiest days of my life, as we drove away from a life of misery and pain, to a life of freedoms: the freedoms of independent living.
In 1985, we moved to Northampton, to the apartment where we now live. We continued to receive services from Shelton's for many years, although this year, we changed our service provider to Pioneer Developmental Services. Our financial arrangements remain largely as they were in Springfield in regard to paying for housing and other essentials. P. D. S. provides us with a van for transportation and covers the costs of insurance, maintenance, and fuel. Our direct care staff are employed by P. D. S. We participate in training new direct care staff in cooperation with P. D. S. supervisors. If it happens that a staff person is just not working out, we have a reasonable amount of control over how to handle the situation, whether that involves asking the staff person to modify his or her behavior, or asking that supervisor to correct the situation. We have a house manager who helps to coordinate the staff schedule and to solve problems that may come up.
I began a career as a consultant and speaker, following the publication of my book in 1989. A few years ago, I gained the official title of "staff associate" at Independent Living Resources, a company which was started by a childhood friend of mine and her husband. I now do most of my presentations through them. I am also presently in the planning stages for a second book.
I would like to lead you through a little exercise to illustrate for you, what it can be like to live without being able to speak. Imagine yourself where you are right now, as you are, except you can't move any of your limbs. Close your eyes and really imagine. Pretend that you can't speak. Now imagine that you have to go to the bathroom badly. How do you feel? What are you going to do? Chances are, you will have to wet yourself before anyone understands what you need. In addition, you will probably be called an imbecile because you had an accident. This is the type of situation I, and many others like me, have had to endure time and time again.
This exercise should give you an idea of how difficult it is to live independently without complete, reciprocal communication. How can someone help with even the most basic of needs, without communication to let them know what those needs are! I understand that the reason you have joined this organization, the Scotty Luce Coalition for Family Preservation, is to advocate for your children with disabilities, so that you and they can realize their rights to live independently in society, which is a right everyone deserves.
Communication is the starting point for self-determination. Without it, there can be no understanding between people. Every person needs to communicate in order to establish his or her own ideas, to let others know how he or she feels, to choose what he or she wants and when he or she wants it, to assert his or her opinion, to establish relationships, and to achieve everything that has to do with being an individual. My friend, Howard Shane, once said that he has never seen a person who doesn't communicate. Every person communicates, and the burden is on those around a person with a speech disability to discover, how, that person communicates. Basically, communicating with a person with disabilities just means giving that person a chance to respond and assert him- or herself. When addressing a person with disabilities, feel free to ask that person questions. I find that many times, a person will greet me, and then turn to my staff person and ask questions, about, me. Once it happened when I was shopping for my wedding dress. The saleswoman asked my staff person what kind of dress she should bring out. I was buying a dress for a very special occasion in my life, and I was ignored as if I had no opinion.
The way to establish concrete communication is to remember that it is reciprocal in nature. It is an exchange of ideas. When people close themselves off, no information is taken in, even when it is being presented to them. Openness really works in many situations. After you have asserted yourself, be aware of and give space for the other person to assert him- or herself. An example of the benefits of keeping communication open can be seen in the following incident. Several years ago, I had to write a speech with a staff person who was frantic about the speech. When I prepare a paper with someone, good one-to-one communication is essential. My staff person wasn't sure what to write about or how to write it. She didn't have a clue as to how to get the ideas from me and onto paper, or how much she had to contribute. When she finally calmed down enough to pick up my word boards, she found out that I had many thoughts and ideas.
When you ask someone a question, he or she will usually respond. But what happens if you don't understand the response? First of all, be patient. Then, react using commonsense, knowledge, and respect. One day I wanted to make tuna casserole for lunch. I told the staff person through the word boards, how to make it. I needed to tell her to run cold water over the noodles so they wouldn't stick together. The more slippery food is, the easier it is for me to eat. I would indicate the words run, macaroni, and water, but she just didn't get it. She did get frustrated, and after a while, looked like she was going to dump the noodles on my head. But in the end, she understood, and I was able to eat without choking on clumps of noodles. If she had remained patient the whole time, we could have avoided the frustration. Impatience is contagious and makes for difficult interaction. However, human nature being the way it is, people sometimes get impatient. I can't really tell you what to do, since each situation is different. Just do your best if you run into trouble. Take a deep breath and keep going.
It is essential that everyone fully realize the importance of integration of people with disabilities into the community, beginning with the schools. One way we, as a society, can measure our level of civilization, is to look at the ways we respond to people with special needs. Teachers really influence the future of society, since education is the means by which people become more civilized. Children are educated in two ways: by being taught in schools and by having to deal with many situations out in the world. Experience is a great teacher. Teachers can set an example in schools by valuing and supporting those of us with disabilities, which will allow us to feel empowered, and to become more independent.
People with disabilities need to learn how to function in society as equals. By the same token, society needs to learn how to function with people with disabilities, and to learn about the adaptations we all have to make so that we can live happily together, with all of our rights intact. Many people with disabilities have had to live in an institutional setting most of their lives. When I was living at Belchertown, no one in my ward realized that food had to be cooked or that clothes had to be washed. To them, these things just disappeared, appeared, disappeared, and came back, with no rhyme or reason. It is imperative to know about all dealings in daily life, if a person is going to be independent.
Knowing how to manage our assistance is a major factor in the success of living independently. Independent living can be fully realized, even by those of us with disabilities severe enough to require physical assistance from others, providing we can train and help manage our assistants. Independent living is difficult, if not impossible, when one is not in control of one's own daily schedule.
Since being freed from institutional constraints, living on my own is like living in an entirely different world. What to wear, what to eat, when to get up, and when to go to bed, are just a few examples of the choices which are now made by me and not for me. Although paying the bills and balancing my checkbook are not my favorite activities, they are things that I now have control over. For one year before I left Belchertown, I received training in independent living from several people, including a couple of people who had disabilities. One person was a woman, Susan Downing, who was studying to be a speech therapist. She was especially inspirational to me because she was building a career in spite of her physical disabilities. The lessons I learned from her and from the man, Andy Grissom, with whom I trained were most valuable, since they had actually gone through what I was soon to experience. When I got out, I could not fathom the great number of things I had never been taught. I was angry that no one told me how to ask my staff people to do what needed to be done. If I had been dealing with independence and living an integrated lifestyle as a youth, I would have had those experiences before.
I hope everyone in the future will be able to live together, in the same community, and will never be segregated. Here is a quote from an article called "The Home School," which best describes my feelings.
It is now time to engender a society that allows all people, regardless of disability, race, creed, language, gender, or sexual [orientation], reasonable opportunities to live, work, and play in integrated environments and activities. One of the best ways to acquire such a society, is to have all children grow up together with their brothers, sisters, friends, and neighbors, that is, in their home schools.1
Continued advocacy will promote growth and learning for everyone. If more plans and programs for integration, designed by both people with disabilities and professionals, are put into effect throughout society, more people will realize that we are all basically the same. Our lives need to be treated equally in all respects. The only way integration can take place is through understanding. This understanding is the result of effective communication. However, meaningful interaction comes from integration. And this is pressed forward by essential advocacy.
People with disabilities deserve the opportunities offered by integrated education, by integrated work settings, and by integrated social experiences. A great deal of joy in life is being able to take risks. This is the only way growth can come about. As we try to change society so that we can all have equal opportunities and independence, mistakes will surely be made. But that is only natural. There is no room for over protective rules and attitudes in integration. We can't afford to inadvertently maintain barriers. Let people make their mistakes, help guide them and be guided, and watch them grow.
Independent living can be completely realized for everyone if we all keep growing in areas of communication, integration and training, and advocacy. Since the publication of my book, I Raise My Eyes to Say Yes, I have been very busy giving presentations to both educational and disability related groups around the country. I now do this work through Independent Living Resources, Inc., where I am a staff associate. I am also a consultant on disability communication and community living issues. There is much work to be done and my time is valuable. But my time is well spent if I have helped you to understand what I have told you here.
For a while, I worked with a seven year old boy, Nick, who had multiple disabilities. He couldn't walk, couldn't talk, and was legally blind. I worked with him, teaching him to use his eyes to indicate objects and to communicate his feelings. He was eager and quick, and I was thrilled with his progress. It got on my nerves to hear that, even though his parents related his progress in several areas, his doctor still believed him to be mentally retarded. He and his family moved to California two years ago last spring, and I have to confess that I was a little concerned about him. I was wondering how his new teachers would react when they read his medical records. I was wondering if any of them would have the skill and the commitment to really communicate with him, and to form their own opinions. Was he presenting challenges that make it easier to ignore him? Weren't his records indicating that his ability to learn is very limited? Would he have a mock education? Would the work that I did with him be discredited because I have no professional qualifications?
Please understand me. The point is not that bright minds are wasting away from neglect, but that every child has the right to learn and grow. The emphasis, I believe, should be placed not on intelligence, but on each person's right to the opportunity to fulfill his or her own potential. My young friend was in the first grade here in Massachusetts when I was working with him. The school system had promised that he would be mainstreamed. Mainstreaming, to them, meant that he was in a regular classroom for only part of the day, and segregated the rest of the day so that his “needs” could be met. Ideally, he should have spent the whole day with the other boys and girls in the first grade, with an aide to give him any assistance he might have needed.
I never did find out out about how Nick did in school in California. I know he attended school because his parents wrote and told me so. Unfortunately, last year, Nick died during a epileptic seizure. We will never know what progress he could have made with his communication skills, had he developed them.
If I had only had had the opportunity to sit in a classroom as a child, alongside the other children in my family's neighborhood. Not only would I have learned my ABCs before adulthood, but I would have naturally developed my social skills as well. But I was 28 years old before I left Belchertown. It was not until then that I would begin to understand everyday comings and goings, events that are nothing special to most, but that I would not take for granted.
When I moved into my first apartment, my new neighbors had never seen anyone as severely disabled as my friends and I were, anywhere but in institutions. This was something new. These adults had not grown up with anyone with a disability and they had a hard time adjusting to the idea that we could live in the community. Kids with severe disabilities were not allowed in their schools. If they had been, it would not have seemed so strange to meet us as adults living and working side by side with everyone else.
It is a grave disservice to the disabled child, not to be fully integrated into the classroom, but it is also a disservice to the other children. What we learn as children stays with us as adults. If we are working toward a diverse and accepting, a civilized society, we must show this to our children. There is room for all of us. We are equal. This is our right. Let's knock down the walls of misunderstanding.
Thank you very much.
1. Brown, L., Long, E., Udvari Solner, A., Davis, L., Vandeventer, P., Ahlgren, C., Johnson, F., Gruenewald, L. & Jorgensen, J. (1989). The Home School: Why Students With Severe Intellectual Disabilities Must Attend The Schools Of Their Brothers, Sisters, Friends and Neighbors. Journal of The Association for Persons with Severe Handicaps, 14(1), 1 - 7.