Down Syndrome

Dr. John Langdon Down, born in 1828 and died in 1896, was the medical superintendent of the Royal Earlswood Asylum for Idiots in London. He studied what he termed Mongolian idiocy which was based on the measurements of the head and palate. This became a racial stereotype in that Asian descendants were called Mongoloids, but they are not directly related to Mongolian idiocy, now termed Down syndrome or Trisomy 21 (Ward, 2004).

More than six thousand babies with Down syndrome are born in the United States each year. Down syndrome occurs in all races, ethnic groups, socioeconomic classes, and nationalities. Genetics play a major role in Down syndrome. A person without Down syndrome has forty-six chromosomes, while a person with Down syndrome has forty-seven. This results from cell division, which is how the chromosomes divide between the sperm and egg, usually twenty-three for each. Down syndrome is determined by looking at a karyotype or a picture of chromosomes after cell division is complete. Chromosomes can be taken through amniotic fluid, usually done by an amniocentesis. Down syndrome is characterized by looking at the twenty-first chromosome which has three chromosomes instead of two, thus called Trisomy 21 (Stray-Gundersen, 1995). Persons with Down syndrome have many different physical characteristics, such as low muscle tone, small facial features, a protruding tongue, smaller head circumference, short stature, and small, webbed hands and feet.

My research is based on the social-conflict theory because society fears what they do not understand, therefore, conflict arises within the socialization of a person with Down syndrome. My hypothesis is that society has a negative perspective of individuals with Down syndrome. For my research, I distributed twenty open-ended questionnaires to ten males and ten females of an all Caucasian population. The total population had ages ranging from twenty years to sixty years. Approximately one-third of the population studied came from Peoria, Illinois. Close to one-third of the population resided in cities south of Peoria, Illinois and roughly another third of the population I chose lived just north of Peoria, Illinois. The majority of my subjects had some college education, while a portion had a high school diploma and a few had a college degree. Annual household incomes ranged from zero to twenty-five thousand dollars to more than sixty-five thousand dollars with the majority earning over sixty-five thousands dollars a year. Of the twenty subjects, there were various religions reported, such as Methodist, Catholic, Presbyterian, and Lutheran, nondenominational Christian. I did not find any correlations between the residence, education, income, or religion of my subjects and Down Syndrome. Over half of the subjects studied knew one or more persons with Sown syndrome, while seven said they did not know anyone with Down syndrome.

I did discover that the majority of females tend to be more passive and positive about Down syndrome, whereas most of the males had more realistically, yet negative comments related to Down syndrome. Age did play a factor in my research in that the subjects, age twenty to forty-five, have less knowledge about Down syndrome. Eleven people said that the maternal age of a newborn with Down syndrome is over thirty-five years. I found that the more personal experience an individual has with Down syndrome, the more knowledge they have about this defect. The frequency of babies born with Down syndrome is based on the mother's age at delivery. At the age of twenty-two, the estimated risk is 1/1065. At the age of thirty-five, the risk is 1/274. This does not mean that only women thirty-five and older have babies with Down syndrome. In fact, seventy percent of babies with Down syndrome are born to mothers under thirty-five. This is because women under age thirty-five have more babies than women over thirty-five (Stray-Gundersen).

Fourteen individuals reported that a person with Down syndrome should live with their family because the family is where the support and love are. On the other hand, six of the fourteen also stated only if the parents give the person with Down syndrome love, or only if at all possible, or only if the parents want to care for the child with Down syndrome. Overall, the results were eighteen out of twenty people surveyed did not feel that a person with Down syndrome could live independently.

I asked all twenty subjects if they had heard of any stereotypes related to Down syndrome. Nine, who were mostly females, said no to this question. Eleven persons gave detailed stereotypes and discriminating words that refer to Down syndrome individuals, such as stupid, retarded, handicap, dumb, ugly, weird, slow, mongoloid, and dependent. They also stated that they all look alike, they have smaller brains, and they have shorter life spans. More than half of the subjects said that a person with Down syndrome is equal to them instead of slower. Individuals with Down syndrome have mental retardation. This means that they learn slower than the average person. Intelligence is measured by using standardized tests that result in a score often computed into a measurement called an intelligence quotient or IQ. Among the general population, there is a wide range of measured intelligence. 95 percent of the population have a normal intelligence with IQs ranging from 70-130. Two and a half percent of the population have superior intelligence with IQs ranging over 130. And two and a half percent have an IQ of less than 70 or below the normal intelligence. There are three different degrees of mental retardation. A person with severe mental retardation has an IQ range of 25-40. Moderate mental retardation means his IQ si between 40-55 and mild mental retardation has an IQ that falls in the 55-70 range. Most people with Down syndrome score in the moderate to mild range of intelligence (Buckley,2004).

I asked the subjects how they feel about working with a person with Down syndrome. My results were fairly equal in both positive and negative aspects. Eleven subjects stated they would be fine, while nine explained that it would be alright as long as the person with Down syndrome is capable of performing the job requirements. The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities, such as Down syndrome, and operates that same as other federal laws that forbid racial, religious, age, and sex discrimination. The ADA declares that no employer can discriminate against a qualified individual solely because of a disability. This does not mean that employers are required to hire people with disabilities

(Buckley, 2004).

I found that fourteen people, mostly females, explained that a special education program would benefit a child with Down syndrome because they are able to learn at their own speed whereas in a regular classroom a child must learn rather quickly. Until the middle of the nineteenth century, children with Down syndrome were excluded from public schools and sent away to institutions. In the 1960's, federal, state and local governments provided educational opportunities to children with Down syndrome. The Individuals with Disabilities Education Act (IDEA), enacted in 1975, improved educational opportunities the most for children with Down syndrome. This act allows a "free" appropriate public education which includes all states. "Free" means that all parts of the child's special education programs will be provided at the public's expense, regardless of the guardian or parents ability to pay. The IDEA requires that children with disabilities be educated in the least restrictive environment to the maximum extent appropriate. The IDEA also requires all states to begin special education services at age three. A diagnosis of Down syndrome is enough to establish eligibility for IDEA. To qualify for this program, there must be a medical diagnosis or a 30 percent or more delay in one of the developmental stages. Mainstream and Inclusion are terms used for the practice of involving children with Down syndrome in regular school and preschool environments as if they did not have a disability. Early intervention provides therapies and other specialized services to lower the effects of Down syndrome that can delay early childhood development. Some examples of professionals that help families of Down Syndrome children are physical therapists, speech and language therapists, occupational therapists, and mental health professionals (Stray-Gundersen, 1995).

I found that almost all of the subjects said that a newborn with Down syndrome should be able to receive health and life insurance because of health related medical concerns. A few people stated that because of the shorter life expectancy, life insurance should not be denied because the family of a person with Down syndrome would need that money for expenses after that person dies. On the other hand there were two subjects that agree with the reasoning behind health and life insurance denial for persons with Down syndrome. They stated that it would not be profitable to society because money runs the world. Insurance is a major concern of families who have a member with Down syndrome. Finding and maintaining health insurance is difficult due to medical concerns at birth and during adulthood. In the past, medical problems associated with Down syndromes resulted in short life spans and premature deaths. Some medical concerns that might occur in conjunction with Down syndrome are heart defects, digestive problems, vision, hearing, orthopedic, and dental concerns, seizures, and leukemia. Approximately forty to forty-five percent of babies with Down syndrome have heart defects. Ten to twelve percent have some type of congenital malformation of the digestive system. Seventy percent of children have some form of vision problem that requires correction. Forty to sixty percent of children with Down syndrome acquire a hearing loss. Ten percent of children and adults have a orthopedic condition called atlantoaxial instability, which causes the upper vertebrae to bend the spinal cord causing serious injury. Leukemia occurs fifteen to twenty times more in a Down syndrome person than in the average person. Medicare, a federal health insurance program, and Medicaid, a state funded program may be available to help with medical costs for those who qualify. In the early 1930's, the estimated life expectancy of a person with Down syndrome was nine years mainly because of heart defects that could not be cured. By 1990, medical care had improved which increased the average life expectancy to thirty years. Today, persons with Down syndrome are expected to live a healthy, fulfilling life beyond fifty years of age (Charbonneau, 2002).

Could a person with Down syndrome become president of the United States of America? Two-thirds answered no. The following were some of their explanations: a person with Down syndrome would not understand what goes on in the world; society is much too critical; this person would not have enough support to run for office; no one would vote for him/her; te average person could not become president; they are incapable of performing the job requirements; and it would be too stressful and too much for them to handle.

Should a person with Down syndrome be able to receive social security income? Ten people said yes because they need it for medical needs and to put toward their future living expenses. Six people stated yes, only if the person has contributed to the collection of social security. Two people said yes if they are disabled and not able to work, otherwise they should receive it like everyone else. The current social security system works like this: when you work, you pay taxes into social security. The tax money is used to pay benefits to people who already have retired, people who are disabled, dependents of beneficiaries, and survivors of workers who have died. The money paid in taxes is not held in a personal account. Any unused money goes into the social security trust funds. A wide variety of federal, state, and local programs offer financial assistance. These programs are provided by the Social Security Administration. Supplemental Security Income (SSI) pays monthly checks, based on assets and income to children and adults with serious disabilities. Social Security Disability Insurance (SSDI) pays a monthly check to adults disabled from work and whose disability began before age eighteen (Stray-Gundersen, 1995).

Should a male and female, both with Down syndrome, have children together? Thirteen responses were yes, but these answers included restrictions, such as the following: if they are capable; if they are in love; depends on the severity of the Down syndrome; if they live on their own; if they understand the consequences; and chances are they will have a normal child. Six individuals said they were neutral about the situation and one person reported that from her experience, males cannot produce offspring. The fact is that males with Down syndrome cannot have children of their own due to lack of or low sperm count. Most women with Down syndrome are fertile, but their eggs are likely to carry the Trisomy 21 chromosome (Stray-

Gundersen, 2004).

In conclusion, I am confident that my hypothesis succeeded and hold true. My research indicates that an individual will associate with a person with Down syndrome if necessary or required. The majority of individuals studied explained that a person with Down syndrome is isolated from society caused by stereotypes, family protection, and limited knowledge about Down syndrome. Although in many countries, the lives of children and adults with Down syndrome are slowly changing, we still deny equality for those with disabilities.

If I would have had a few more months to research and interview, I believe I would have more positive and negative results. Maybe I would have been able to observe children with Down syndrome in a school setting or child care center. It would be great to participate in a harmless study.

References

Buckley, Sue. 1996-2004. Living with Down Syndrome. Portsmouth, U.K.: The Down Syndrome Educational Trust.

Charbonneau, Nicolle. March 2002. Down Syndrome Life Expectancy Doubles.

Health Scout News.

Stray-Gundersen, Karen. 1995. Babies with Down Syndrome: A New Parents' Guide. 2d ed. Bethesda, Maryland: Woodbine House, Inc.

Ward, O'Conor. 1996-2004. John Langdon Down: The Man and the Message. Dublin, Ireland: The Down Syndrome Educational Trust.

Author
Herold, Jamie. 2004. Edelstein, Illinois.