Being Different (9); You Just Hide Better Than Us

The word "will" stands out prominently on the main image of the "Karen Gaffney Foundation" website. Next to it is a photo of Karen swimming. Karen is a champion swimmer, someone who swam 21 miles (about 34 kilometers) across the English Channel in 14 hours. However, the concept of will is not hidden in this heroic act of hers; rather, Karen is among those who shift boundaries and change a seemingly predetermined fate; one can have Down syndrome and still be a successful person, contrary to all the stereotypes that exist about it. Karen's heroic action is, in fact, overcoming these stereotypes that seem unchangeable and eternal. One can be impactful regardless of disabilities, just as Karen has begun a magnificent battle to overcome ignorance about Down syndrome. The "Karen Gaffney Foundation" has been so influential that Portland University in the United States awarded Karen an honorary doctorate. Nevertheless, there are still many who look at Karen and all individuals with Down syndrome with skepticism; doubt in their abilities, doubt in their understanding, a doubt that is crushing to the extent that it forces Karen to say: "People with Down syndrome understand much more than others think about us. We know when people are being unfair, we understand when they are being forceful, we feel rejection, and all of this is painful..." In the ninth part of the "Being Different" series, Karen Gaffney talks about her concerns and her world. In a recent experience, she shares with me that when she first talks with her friends about your abilities and what you have achieved, they are often very surprised; you are a champion swimmer, you have studied up to an associate degree in university, you have received an honorary doctorate, and you also advise families of people with disabilities. All of this while you have Down syndrome. How has Down syndrome not prevented your progress? First of all, thank you for your kind words and definitions. In response to your question, I must say that yes, Down syndrome has not been able to stop me from trying, and I try as much as I can. Every day is filled with hard work for me. I never let my disability be an obstacle in my life. Of course, there have always been people with me who have helped me focus on what I "can do" rather than what I cannot do. We have all tried to overcome the obstacles in front of me. Is Karen Gaffney an exception among all those with Down syndrome? I will elaborate. There is a prevailing attitude and belief among many people that individuals with Down syndrome are too disabled to learn, study, and create a suitable social position for themselves. You can be a denial of this attitude. But can other individuals with Down syndrome be like you and overcome the limitations imposed by this syndrome? A few points about Down syndrome: Down syndrome is a genetic condition named after Dr. John Langdon Down. This British physician characterized the common features of individuals with this genetic condition in the 1860s. However, it was actually Dr. Jerome Lejeune, a French physician, who discovered about 90 years later what causes Down syndrome; an extra chromosome 21. The Global Down Syndrome Foundation names Down syndrome as the most common chromosomal disorder that causes delays in a child's mental and physical development. However, this website emphasizes the range of abilities of individuals with Down syndrome, which can be unpredictable. There are incorrect stereotypes about individuals with Down syndrome that portray them as disabled in every way. One of the Down syndrome centers in Australia tries to remind the most obvious issues in light of these stereotypes: "All individuals with Down syndrome have feelings, thoughts, hopes, and dreams, have specific interests, and know what they want from life. Many of them, if given appropriate support, will lead independent and interesting lives." In modern approaches to Down syndrome, special and targeted education during childhood is emphasized. This is the key that can lead to their independence in adulthood. The Global Down Syndrome Foundation states that the number of individuals with Down syndrome living independently is increasing. A small but growing number of them are also getting married. If we believe in something called IQ, the IQ of individuals with Down syndrome has increased in recent years. According to the Global Down Syndrome Foundation, the IQ of about 40% of individuals with Down syndrome is now between 50 and 70. 1% of them have an IQ between 70 and 80 (apparently, the average IQ of most individuals is between 70 and 130). Individuals with Down syndrome are prone to some medical conditions, such as congenital heart defects, sleep apnea, and Alzheimer's. However, evidence suggests that in recent years, the health status of most of these individuals has improved. Imagine that in 1983, the average lifespan of individuals with Down syndrome was only 25 years. Today, however, it has reached about 60 years. Various reports have been published here and there indicating a linear relationship between the age of the mother and the occurrence of Down syndrome. According to these reports, the older the mother, the higher the chance of Down syndrome in the fetus. But statistical realities say otherwise; in a place like the United States, 80% of children with Down syndrome have mothers under 35 years old. And one more point to remember; those with Down syndrome may have similar facial features, but their temperaments are certainly more similar to other family members than to each other. I don't think I am an exception in the community of individuals with Down syndrome. Many people my age have had access to the same opportunities I have had; special education at a very young age, before the usual school age, helps us prepare ourselves to participate in the classroom and show those around us that we can learn. Many young people my age have received good education and are now working hard to overcome their limitations. I believe that those who are like me can do many things and can overcome their limitations. I encourage them to do their best and to think positively about themselves and never give up. What is your world like, Karen? Is the world of those with Down syndrome as simple and devoid of complexity as we imagine? I do not think at all that my world is simple. I have many concerns that are similar to those of others who have no disabilities. For example, I recently lost my job and am now looking for a new one. My current situation is also somewhat difficult, like everyone else looking for work. The job market for those with disabilities is even harder than for others. Besides this, I also have a surgery coming up that needs to be done on my hips. When I was younger, I had five different surgeries on my hips, but now I have to have this surgery done on both of my hips again. I have managed to cope with the problems I have had with my hips for a long time, and that is thanks to swimming. This is my current situation. From my perspective, individuals with Down syndrome have many worries and difficulties that are similar to those who do not have our disability. I usually say that we are more similar to others than we are different. We just learn in a different way. I think when people encounter individuals like me who have achieved many things in life, they realize how important it is to treat them like everyone else. Sometimes people have stereotypical behaviors and views towards individuals with disabilities. I understand very well how painful and difficult these stereotypes are for people like me. We just learn in a different way. In discussions about disabilities and individuals with disabilities, phrases or concerns like this are always repeated that the complex and often ruthless human society easily crushes these individuals. How do individuals with Down syndrome face and comprehend these complexities and potential deceptions? I know that individuals with Down syndrome understand much more than others think about us. We know when people are being unfair, we understand when they are being forceful, we feel rejection, and all of this is painful. Most of our time is spent learning how to ignore these encounters. But I believe we need to do more. In the speeches I have given across my country, I have often talked about how it feels when one realizes they are treated differently from others. I also speak about the importance of friendship, which means come and be friends with those who are different. I find it interesting that you have studied in regular schools and not in special needs schools. You have also gone to university and progressed to an associate degree. I don't think that is an easy task. How did you cope with the differences you had with other students? Were these differences not an obstacle for you? Was it not bothersome? I succeeded in overcoming my differences through hard daily work. I worked hard every day to show that I can learn. I worked hard to reach where I am today and to be a good role model for individuals with Down syndrome and other disabilities. Do you support the integration project for special needs children that has become common in Western schools, where special needs students are placed alongside regular students? How effective and successful do you think this project is for those with Down syndrome? Karen Gaffney: I do not think at all that my world is simple. From my perspective, individuals with Down syndrome have many worries and difficulties that are similar to those who do not have our disability. I usually say that we are more similar to others than we are different. We just learn in a different way. I support the integration project. We call it participation and social integration. I think participation and social integration are important for both students with disabilities and those without. Everyone learns more about the other. Although students with disabilities need certain privileges. We need help to be prepared to participate in a regular classroom. If everyone works together to implement the best methods for our education, then participation and social integration will be successful and effective for everyone. I think participation and social integration help people like me in learning, living, and growing so that we can actualize our most important potential abilities and achieve our goals. In one of your interviews, you said you have a simple message for everyone, that individuals with disabilities want to be treated like everyone else. This issue is not simple for people who look at disability with sorrow or fear. What has your personal experience been with people's behavior, both when you were a child, as a teenager, and now that you have become a recognized figure? Regarding my personal experience, I must say that elementary school was very difficult for me to be considered part of the group. People behaved differently towards me because of my disability. I felt this same feeling in the first year of high school. Other students really knew nothing about Down syndrome. But I continued on my path because I wanted to make a change in the world. I just believe that we must continue to work hard to help others understand the world of people with disabilities. We must continue to work hard so that people with disabilities can learn and grow alongside others. I would like to say that we must shine a light on the achievements of individuals with disabilities so that others can see how much can be done to overcome our limitations. Is disability really scary or sad? Would you wish you didn't have Down syndrome and were like the majority of people? Having a disability can be scary for anyone. For me, it is something I was born with. There is no escape from it. If I didn't have this disability, I could probably see better, hear better, walk better, and learn faster. So my situation could definitely be better. But anyone you talk to would say the same kind of things. Isn't that right? We all wish for better conditions regarding some issues. And we all strive to improve our situations. What has your experience of friendship been like for you and how is it now? I read somewhere that your mother mentioned you had difficulties in this area during childhood. Why? I think parents can be convinced that if their child is going to have a disability, they should not have an abortion.