Background and Description
Down syndrome is a congenital chromosomal anomaly characterized by an extra chromosome 21. A person has 23 pairs of chromosomes, so a typical child has 46 chromosomes, while a child with Down syndrome has 47 (American Psychological Association, 2019). A special appearance of the patient characterizes Down syndrome and decreased intellectual abilities. The frequency of this chromosomal anomaly in the population is 1:800 and does not depend on gender, race, family socioeconomic status, or the presence or absence of unhealthy habits in parents.
Good visual memory is one of the strengths of people with Down syndrome. It aids in the development of receptive speech, as it is easier for them to perceive and remember what is presented visually. One problem is that people with Down syndrome may not always accurately understand what they see, particularly when it involves abstract concepts and ideas, which, as is well known, can be challenging to visually depict (Wehmeyer et al., 2017).
For example, when witnessing heated arguments between family members over political or economic issues, people with Down syndrome understand most of what is said. Still, they cannot get to the heart of the disagreement. Similarly, people with Down syndrome may recall complex mathematical formulas or words that describe a scientific concept, but may not understand their meaning, regardless of the use of assistive visual aids (Antonarakis et al., 2020).
Nevertheless, although most people with Down syndrome have fundamental limitations in understanding speech, visual support can be constructive for them. So, it helps them learn about specific behavioral norms in a given setting. The fact is that certain features characteristic of Down syndrome significantly complicate the mastery of pragmatics. This ability is especially deteriorating under the current conditions of the pandemic’s spread (Turk et al., 2020).
People with Down syndrome may have difficulty understanding the rules of conduct because they are abstract and lack a visual basis. In particular, individuals with Down syndrome may struggle to understand the distinction between proper behavior in a public setting and interaction in informal and everyday situations (Alon, 2019). In this work, an interview was conducted with one person who suffers from this syndrome to discuss the problems he faces in real life.
Interview
I interviewed a 30-year-old man diagnosed with Down syndrome. The survey was designed to identify this person’s primary problems in everyday life, ranging from simple daily household tasks to integration into social activities. Based on the articles read, I have created an interview that raises questions about the man’s ability, family support, workplace, and social interaction, with a focus on the potential medical complications associated with the syndrome.
The survey participant indicated that speech is his weak point, and he often uses nonverbal cues to convey information. Because such expressive language is often incomprehensible to many and somewhat limited in conveying diverse messages, individuals experience constant difficulty integrating into social activities. His family is doing everything possible to support him, and the understanding between close people has reached a much higher level than that between strangers or unfamiliar individuals.
Physical activity is not a problem for the survey participant, as he performs all daily tasks independently without assistance from others. Again, when it comes to the need to interact with the “outside world,” whether making a phone call or contacting a medical facility and explaining current health problems, a man turns to his loved ones for help. Regarding the question about the extent to which legislative rights and their observance contribute to better or worse integration, the survey participant was unsure how to answer, as he had not studied his rights in detail.
He considers himself an average person, and the constant mention and emphasis on his deviation annoy him somewhat, but he has learned to deal with it mainly because of his loved ones’ tolerance. His views on the ethical side of this relationship are also relatively calm – he is no longer surprised and irritated by the reactions of strangers to his speech defects; however, during prolonged communication, he still expects the interlocutor to show no condescension towards his personality. He believes that it is only thanks to constant challenges that he becomes more vital every day and increasingly eliminates the consequences of the syndrome.
Issues and Challenges
Questions of attitudes in the family towards people with Down syndrome are regulated exclusively by ethical standards adopted in this unit of society. However, when considering a larger community and aspects of interaction with it at the level of social integration, people with Down syndrome may experience several difficulties in establishing communication. Highlighting the main problem as a speech defect that occurs in most patients, the solution to communicative tasks becomes a stumbling block in the described processes. This factor can be critical in work activities that involve constant communication with customers or employees, solving everyday purchasing problems, and interacting with sellers or consultants. Any sphere of life activity that is critically related to verbal communication is challenging for people with Down syndrome.
At the same time, the interviewed man noted that he was receiving increased medical attention because of the greater risk of developing many diseases. In this matter, he does not fully understand the details and wholly trusts his relatives, who are involved with him in visiting doctors and undergoing examinations. He said that he has an increased risk of dementia and neurological diseases, while annually or even several times a year, he checks his eyesight and hearing.
Legal risks may arise from legislative assistance to patients, as doctors’ services are expensive and their limited abilities do not allow them to secure well-paid jobs. The man works only a few hours a day as a gardener, tending to the plants. He has a small area that he controls, and he loves this job very much, as it does not require speech or hearing, but helps maintain his motor skills and form. He does not have the opportunity to assess the level of his salary and working conditions, as he has nothing to compare it with, but he is delighted with his position.
Laws
The Americans with Disabilities Act (ADA) guarantees employment and assistance to people with disabilities, which generally contributes to solving the problem of social inclusion. The Individuals with Disabilities Education Act (IDEA) has a similar goal concerning educational opportunities. At the same time, the law requires funding only for IDEA (Disability Rights Education & Defense Fund, n.d.). Indirectly, ADA provides tax benefits, but it does not directly address social integration; it only slightly facilitates it. The main financial costs of maintaining a disabled person often lie with close people since a person with a similar diagnosis is not able to earn large sums of money.
In essence, the ADA primarily pursues misbehavior against persons with disabilities, while the IDEA determines the order of opportunities for them (Disability Rights Education & Defense Fund, n.d.). These laws generally contribute to the social integration of people with Down syndrome; however, they are quite laborious in relation to solving everyday problems and the assistance that this group of people needs.
Nevertheless, the main problem identified in the interview is the possibility of not only social protection and integration into society of a disabled person but also everyday support on several fronts at once: medical, psychological, moral, and financial. Currently, these functions are delegated to other institutions and are governed by law only in relation to medical care (Antonarakis et al., 2020). However, implementing additional legally protected rights to some resources is still necessary for people with Down syndrome, especially those without loved ones who will come to the rescue.
Experience
However, the person with whom I spoke’s limited abilities do not prevent him from adequately coping with difficulties or from relying on anyone other than relatives for help. He does not study laws or look for opportunities to protect his rights; instead, he acts from his strength. In any case, such individuals should not be left without help, as it would be challenging for them to cultivate the will and peace of mind they now possess without the support of those close to them.
From my perspective, I have learned to develop resilience and ease in the face of problems, but at the same time, I can see opportunities to improve their lives at a higher level, up to the federal level. The protection and control of rights at the moment is a significant achievement, but the solution to everyday needs cannot be entirely delegated to particular institutions and volunteer organizations. It should also be aimed at people who help disabled people, since, in the social structure, they are much more likely to interact with all the mechanisms involved.
References
Alon, R. (2019). Social support and post-crisis growth among mothers of children with autism spectrum disorder and mothers of children with down syndrome. Research in Developmental Disabilities, 90, 22-30.
American Psychological Association. (2019). Publication Manual of the American Psychological Association (7th ed.). ISBN: 978-1-4338-3217-8
Antonarakis, S. E., Skotko, B. G., Rafii, M. S., Strydom, A., Pape, S. E., Bianchi, D. W. & Reeves, R. H. (2020). Down syndrome. Nature Reviews Disease Primers, 6(1), 9.
Disability Rights Education & Defense Fund. (n.d.) A Comparison of ADA, IDEA, and Section 504.
Turk, M. A., Landes, S. D., Formica, M. K., & Goss, K. D. (2020). Intellectual and developmental disability and COVID-19 case-fatality trends: TriNetX analysis. Disability and Health Journal, 13(3), 100942.
Wehmeyer, M. L., Brown, I., Percy, M., Shogren, K. A. & Fung, W. L. A. (2017). A comprehensive guide to intellectual and developmental disabilities. Brookes. ISBN:978-1-59857- 602-3