Growing up with Down syndrome
Sue Buckley
Abstract - At the first session of the International Conference on Down Syndrome held in Orlando USA in August, young people with Down syndrome told their own stories. They made a great impression on me and we have transcribed them from the audio-tape as I feel sure the young people would like to influence as many parents and professionals as possible. These presentations help everyone to understand how it feels to grow up with Down syndrome. They contain moving accounts of how the young people appreciate what happened to their parents, their views on what is and has been important in influencing their lives so far and their aspirations for the future. The presenters come from all around the world. If they did not speak English, simultaneous translation was provided. I leave them to speak for themselves.
Keywords - Down Syndrome, Self-Advocacy, Quality of Life
IntroductionAt the first session of the International Conference on Down Syndrome held in Orlando USA in August, young people with Down syndrome told their own stories. They made a great impression on me and we have transcribed them from the audio-tape as I feel sure the young people would like to influence as many parents and professionals as possible. These presentations help everyone to understand how it feels to grow up with Down syndrome. They contain moving accounts of how the young people appreciate what happened to their parents, their views on what is and has been important in influencing their lives so far and their aspirations for the future. The presenters come from all around the world. If they did not speak English, simultaneous translation was provided. I leave them to speak for themselves.
Mitchell Levitz"Good Morning. My name is Mitchell Levitz. I am 22 years old and live near New York City. I attended my local schools and had both normal education and special education for students with learning disabilities. I graduated with a high school diploma. I think that students with disabilities should be included in normal education with other students, so they can make friends and have the same opportunities as all other students.
I always felt a part of my community and participated in scouts, competitive soccer leagues, summer camps and education and my Barmitzvah. Now I serve on the ritual committee of my synagogue. Now I’ve learned from personal experience that it makes a lot of sense for young people with Down syndrome to begin early, having experiences with jobs, so that they can have a chance to prepare for careers for jobs in today’s society. I learned about different kinds of work
skills when I was in school, by having my own tutor, work experiences and paid employment. After finishing high school, I wrote to the book teller at the bank, and trained to work. I am now working four days a week as an office assistant, at the local Chamber of Commerce.
I take public transportation to work, I am being trained on the computer and I can use the fax machine, the copier and do filing. I help prepare mailings and I answer the ‘phones and provide information. I also help working customers with directions or events in our community. What I like most about the job, is when I go to the bank, post office, city hall and to other businesses for the office staff. I see and meet people I know who live and work in town.
When I’m with my friends and family, I like water skiing, down hill skiing, tennis and ping-pong. I enjoy travelling, watching basket ball and wrestling. Everyday I read the newspaper so I know what is happening in the world. Now I am serving on the Governmental Affairs Committee, of the New York State and City, and the Community Action Committee for my local schools. I will be helping with two political campaigns, taking a course at Westchester Community College and joining some active groups. After high school I lived in a traditional apartment and learned to cook, clean, shop and budget my money. Next month, I’ll be moving in to a house, live independently, and share the rent with a few other people.
Something very exciting for me and my friend Jason Kingsley, was writing our book. It is called ‘Count us in - Growing up with Down syndrome’. It is being published by Harcourt Brace and will be in book stores by January. We will be going on a national book tour and doing public appearances. Information about this book, is available at this conference.
My career goals are being in politics and government, part of this is to help other people like myself. I believe it is important to talk to people and listen to their concerns. Being an advocate allows you to speak for yourself and for others on issues that affect people with disabilities, for example, health care and equal rights for all individuals to prevent discrimination in schools, the community and in equal opportunities. It is important for us to make sure that the leaders of our countries are informed about these and other issues. This happens by getting parents, professionals, people with disabilities and the community together to work out solutions.
My message to all of you is to keep your minds open to the idea that we should be able to make our own choices. If young people with Down syndrome are given opportunities to have many experiences in life, we will be better prepared to make decisions for ourselves. My advice to you is to encourage children and adults with Down syndrome with their dreams and goals and to believe that success comes from believing in ourselves."
David McFarlane"I have been asked to tell you about myself, what I do, my dreams and goals and any advice I wish to give you. I lived with Down syndrome all my life! The living part is great, but changing attitudes is tough going. Having completed my education, in segregated schools, I decided to try a regular high school system. Math, English and Science were tough, but I graduated with my secondary school diploma. Some people thought I would be a senior citizen by the time I’d finish! I also completed a cooking course at George Brown College.
Acting has been my main employment. It is difficult to find roles, since most stories do not include people with disabilities. The roles that are the most challenging for me, are the roles in which the person has very limited abilities. It’s challenging, because I want to make sure that I portray the person with dignity. My second source of employment has been as a regular guest speaker at two Universities. I speak about four times a year at each University, to students in the faculties of education and social services. A small portion of my income comes from my financial portfolio. I became interested in my own finances through the ads at my bank and through the recession of the 80’s.
Physical fitness is important to me. I play floor hockey, special Olympics and I also swim. My swim specialities are freestyle, back stroke, breast stroke and the butterfly. I figure skate with the University’s skating club and I’m working on a scene of bronze dances. I am also an amateur coach with the club. I use the University’s complex for fitness, swimming and ballroom dancing. I voted since I was 18 and have the uneasy experience of being summoned for jury duty twice in three years. The first time, I read the summons. There was a question, ‘are you blind?’ I wondered how someone who was blind could read that form! There was another question that said: ‘do you have a handicap?’ I wrote ‘no, I have Down syndrome’. I have appeared for jury duty both times, I wasn’t chosen, but the lawyers had to acknowledge me.
As an advocate on behalf of the Canadian Association for Community Living, I have the opportunity to be a witness at an inquest. A person with Down syndrome was killed in a traffic accident. Some people in the community felt that people with disabilities should use only special buses. The inquest jury supported my testimony that people with handicaps do, and should, have the right to use public transportation.
Since 1981, I have been meeting with a group of young adults who have Down syndrome. We are part of the National FAA (The Future Adult Advisors). We’ve been working on improving our social and problem solving skills. We’ve also been learning how to attend conferences. The major concerns are employment, housing and further education. As far as my goals are concerned, I have already achieved many of them. My dreams are a little more difficult. I visualise a time when my friends and I are capable of choosing the right priorities and have the right skills to maintain employment and also be able to manage our own lives. We need your understanding and skills to do this. We need to be given the chance and the time with priority of our dreams.
You know what? Sometimes I wonder what it is like not to have Down syndrome. I wondered what I’d look like. I wondered if I’d be a scientist studying the 47 chromosomes that effects my appearance and slows my rate of learning. We all have a lot to learn, so let’s learn from each other."
John Taylor"I will be 27 years old on 27 September. I live with my mother and I am the youngest of 4 children. My older sister, Laurie, is a writer, actress and a film maker. She and her husband won two Ace awards for their documentary about me, called ‘Yours to keep’. My sister Mary is a singer and songwriter, and has recently returned to college to become an occupational therapist. My sister Bridgette, is finishing her Doctorate in psychology at Ruckers University and works with autistic children. When I was born, and the doctors told my mother I had Down syndrome, they told her I would never be able to do much of anything. Well let me tell you some of what I have done.
After I finished school, I had to get a job. I had to learn about going on job interviews, about being able to take responsibility and about getting along with others. The problem was, where would we find someone who was willing to hire someone with a handicap? My family and I talked about it and decided my sister Laurie would write letters to different places. I went on some interveiws and got a job as an animal assistant. I liked the animals and I liked the people, but after several weeks I got laid off. Actually, I got fired. That was no fun. So my mother decided I should get some experience working with a counsellor. So I got a job through the ARC, working in candy factory. I wrapped candy in plastic and I liked my work and my counsellor, but the thing about the job was I only got $17 a week and that made me angry and frustrated, because I worked very hard.
Luckily for me, I was asked to audition for a movie called ‘The Seventh Sign’. I went to New York and read for the part. They liked me and I went out to Hollywood, California for 5 weeks. The director was Karl Scholtz. I had to learn my lines and wait around a lot and put in long hours, just like everyone else. They didn’t treat me like a retarded actor, they treated me like all the other actors. I especially liked that. I made a lot of money from the movie. After I’d finished the film, I decided I didn’t want to go back to the candy factory. I took the summer off and went up state to my aunt’s house to think about my life and have a vacation.
At the end of the summer, my brother in law wrote a letter to Sam Goodie record store, and told them about me. He told them I loved music and asked them if they would give me job. They said I could go for an interview. That was in October 1987. I got the job and have been working as a retail associate at Sam Goodie ever since. I ring up customers, advertise the cassettes and sometimes I set up the displays. I recently learned how to do special orders, and my boss is teaching me how to use the register. My boss gets many compliments about my work from the customers. In April of 1988 I was employee of the month and I have just received an award for excellent customer service. I still want to do more acting and I have a manager called Brian Glass and he sends me on auditions for movies and off Broadway plays. He sometimes sends me for roles that not specifically written for people with Down syndrome.
In the past few years, I have gone to Washington DC with the National Down Syndrome Society to testify before congress. I told Senator Daniel Innaway and Senator Tom Harken how important it is to get money for the research on the cause of Down syndrome and money to help people with Down syndrome to get jobs.
I have a girlfriend called Andrea. I have known her since we were 5 years old. We have been going out together for 5 years and in 1988, I gave her a diamond. She is very pretty and very smart. She also has a job and some day we would like to get married. I hope that in the future, doctors will tell parents of children who have Down syndrome to give them a chance to encourage them to be whatever they want to be".
Andy Trias"From age 3 to the age of 7, I went to a parish school near my home. One day I asked my mother why the children in my class were aged 4 and I was the only one aged 5, and she told me that I had a problem that made learning more difficult, but she said that children are all different and learn if they make the effort. Then I went to special school where I learned to read and many other things. I learned to help children who have more problems than I. When I was 11 years old, my teachers and my parents decided that I was ready to go to a regular school. It was a very large school and there were 30 in the class. Most of them were 2 years younger than I, and I stayed there until I was 17.
In those 6 years, I learned many things. I have made my education work. The effort has been worthwhile for myself and for other people. Each one of us with our own differences, can find a place in the world. What I disliked most, was leaving the class for individual support and what I liked best was history, which has always interested me very much. I was very lucky with my friends, and I learned a lot from them and they always treat me like one of them, and I cannot forget my teachers who helped me very much. At home, they treat me the same as my brother and sister and I quarrel quite often with my sister who is quite near me in age!
One day I was asked what I felt when I discovered that I had Down syndrome. At first, I did not like to know this, or at least I should have been told when I asked my mother why my class mates were two years younger than me. They took a long time to tell me. This is something my friends complain of regarding their parents, also. I should have preferred to know sooner. I should like to ask all the parents of children with Down syndrome not to worry and have confidence in us. We need the confidence in order to progress, because we are like everyone else. Although we have Down syndrome, this does not mean that we do not feel the same as any other normal person. I have never given any importance to the Down syndrome of my friends. I have always wanted to help those that need help. To finish, I would like to ask teachers to give a lot of importance to our education, and parents, that they have confidence in us."
Mariana Paez"When Mum and Dad made me, some 25 years ago, there were no methods in our country, to determine whether a baby would have Down syndrome. When Mum started labour pains on August 2, 1968, she went to the hospital. Some hours later the doctor said ‘push, there’s the head, push a little more’, and so I was born. The doctor told another doctor that I had Down syndrome. When mum saw me she cried a lot. My dad told her ‘calm down’. Anyway, they registered me with my own name, Mariana.
Since I was very little, I had early intervention. Doctor Lydia Corriat, who was my doctor, would talk with my mother and say your daughter won’t be very intelligent, but she’ll have lots of things to do when she grows up and she’ll be able to do what she wants, this much I can guarantee. I grew up and different professionals helped me to speak better, to think, to read, to write, and do many things that would prepare me for life. My development was slow but sure. I was integrated in a regular kindergarten and then attended a normal primary school up to fourth grade. My fellow classmates were my friends and lent me a hand, they were very kind and understanding, but they learned much more quicker than I did.
Each one chose his own life and I chose mine. I continued my education up to adolescence in special education schools. I made new friends there. My family, my friends and my teacher shared these years with me, little by little I discovered my true vocation - be a professional cook. Right now, I am attending school, and this year I will complete the work apprenticeship in the pasta factory. When I leave school, I will work in another factory. I also go to the Institute where I am taking the first year course to become a professional cook. If all goes well, next year I’ll graduate at the same time as my classmates who do not have a handicap.
I would like to tell you that the people at the Institute, the principal and the secretaries, encouraged me with my studies. In the different events in which I have taken part and for which I have had to work until dawn, my classmates and the public who attended, made me feel like they don’t care that I am Down. My future project is to have my own food enterprise, even though I know that I need help, I will work hard to make it work. I want all the young people like me to be able to feel the same, would be able to find a decent job and earn money.
I would like to tell the parents who have a handicapped baby, to let it enjoy their love and affection, to show it that it doesn’t matter to have an extra chromosome. What matters is that we develop as individuals, with the same right to live as anybody else as a human being and have a future of work with friends of the same age, whether ordinary or handicapped. What matters is that they may become a grown up woman or man and that when they finish work, they are able to go to parties or spend the night at friends, not to discriminate them for being as they are, that everyone listens to our voice, understand it and recognise our rights as citizens.
Above all what I want to say, is that what matters most for me is that people value what I think. I want to be happy with my parents and with my siblings but I also want to have my home and family, with Christian my boyfriend, built on our love. I have come to terms with my handicap, but I don’t want to depend on my siblings when my parents are no longer with me. I work, I study and with my friends we will achieve a full life even though with some support. Handicapped people need help to carry on - not everyone understands this. I have always said that people who laugh at people who are handicapped, are much more handicapped than us. I would like to finish by saying that it doesn’t matter to have Down syndrome, it matters to be alive, to feel and to hope like everyone else. It is true that we need help to carry on and fight in order to enjoy life, but the challenge is worth it."
Paloma Garcia-Sicillia"My name is Paloma and I come from Mallorca, Spain. Before I start about my own life I would like to mention something very important for me, because I have heard Andy Trias saying about what he felt when they told him that he had Down syndrome. The same happened to me, but in a different way. I knew it by watching a TV programme that was there and I understood more or less what my parents felt when they had me.
Although I am a Down syndrome person, I went to the school of the British Council school, where I stayed about 25 years. There I won the first certificate in English and the most wonderful thing that happened to me was the first time I went to the United Kingdom, and not only this, but also because it was a step, a very important step for me because I learned another language that was not mine, and also because I was capable of going over to the UK and hear people speaking English and to understand them. During my studies I ran an English magazine and was on the Editorial staff, and there I wrote several critics of plays and films and other things, poetry and stories.
The reason why I went over to Mallorca to live, was because I felt that it was time to be a bit independent and by myself and defend myself in life. Also because I felt very strong ties between my parents and my only brother and my 5 sisters that I have. There, in Mallorca, I studied for graduation and after this graduation, I was awarded by the Ministry of Education and Science a certificate.
My hobbies are, and I enjoy very much, reading, classical and modern authors, also some poetry. I do quite well in swimming, I love classical music and opera music. The theatre, cinema and also I like famous painters, like Michael Angelo -I went to Rome, that’s why I like Michael Angelo! Travelling and writing books that I have been now trying to make by myself.
Really, this is not my first time that I have been in Down syndrome congress. From there I have learned many things that I did not know before hand, and I really felt that sometimes there is a misunderstanding about being with Down syndrome. In a way I think that also it is important that from here, I want to say something that for me is very important, and I believe that parents and professionals, I want to tell them that they must continue giving their support and courage, their own experiences and knowledge and to give to all of us who have Down syndrome something that is so human and important - because I believe that we must leave those clichés that some people put us in, because it is not worthy, because we are also people and we know how to defend ourselves if we are able to have the support and your ability to show us how to do it. The thing that is not always easy for us, the Down syndrome people,is to know how to use our independence, and that is our goal. Why not give us more opportunity to grow? Let that protection that some parents have with their children, let that word be erased out of the dictionary, completely out of the dictionary!"