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ADVERSITY FOR THE DISABLED

 

Humans with disabilities have always been with us. A disability may occur during the foetal stage, shortly after birth or at any time during a person’s lifetime. In the distant past many disabled people were left alone to fend for themselves but there is also reason to believe that in many instances they were helped through acts of empathy and compassion. The need to help other humans and animals is a powerful feeling that is innate in many humans.

Two researchers have supported the idea of caring for the disabled in Anthropological Science and in the International Journal of Paleopathology (the study of ancient diseases and other ailments as found in human remains and in the remains of other organisms; definition extracted from wisegeek.com). A single skeleton, Burial 9, attracted attention during an excavation of a burial ground in a site called Nam Bac in Northern Vietnam.

Unlike the other skeletons, Burial 9 (a man), had been placed in a foetal position. Following careful analysis of the bones, Lorna Tilley and Marc Oxenham of the Australian National University in Canberra concluded that the man had likely been, paralyzed from the waist down caused by a congenital disorder (deformity, birth defect, or oddity) believed to be Klippel-Feil Syndrome. The man would also have limited or no movement in his arms, thereby making him profoundly disabled and certainly unable to care for himself. Miraculously, the man lived into his 20s, in an environment where people hunted, fished, and raised semi-domesticated pigs he had people who cared for and about him; he must have been quite tenacious and had a strong survival instinct.

“There’s an emotional experience in excavating any human being, a feeling of awe ... to tell the story with as much accuracy and humanity as we can ... I’m obviously not the first archaeologist” {to discover proof that people needed help to survive in prehistoric cultures} said Ms. Tilley, a graduate student in archaeology. (By James Gorman, December 17, 2012; nytimes.com: Ancient Bones that Tell a Story of Compassion)

Another case involving empathy towards a disabled person was revealed following the discovery of a deformed skull of a 5-8 year-old (pre-Homo Sapiens sapiens) child uncovered in Atapuerca, Spain, by Ana Garcia, who named it Cranium 14. There is sufficient evidence to conclude that the deformity was present at birth. The human remains of 28 other persons at the site indicated no deformities.

The findings indicate that prehistoric humans (at least some of the time) cared for children with physical deformities and mental disabilities. This child, believed to have been suffering from craniosynostosis, “A birth defect in which one or more of the fibrous joints between the bones of the baby’s skull (cranial sutures) close prematurely (fuse), before its brain is fully formed. Brain growth continues, giving the head a misshapen appearance.” (Definition taken from mayoclinic.org: Craniosynostosis)

As reported in a paper in Proceedings in the National Academy of Sciences, the remains of a prehistoric pelvis named 'Elvis' that date back 500,000 years indicate clear evidence of aging and impairment. This man, who lived in Spain and was likely a member of Middle Pleistocene African species Homo rhodesiensis a close relative to humans, is thought to be over 45 years of age, quite aged for his time, according to lead author Alejandro Bonmati. The man suffered from a spinal cord deformity causing tremendous pain, and forcing him to stoop over; he probably used a cane to walk. Contrary to being a burden and left on his own he was shown compassion and was helped by his group. As an elderly member of his group, he may have had valuable hunting and fishing experience, and more.

According to lead author Alejandro Bonmati, a researcher at Complutense University of Madrid and the Carlos III Institute of Health, "He {this man} possibly used a cane, just as a modern elderly person does ... This individual may not have been an active hunter and was impaired to carry heavy loads, thus an important source of his food would depend on other members of the group, which would mean sharing." (By Jennifer Viegas, October 12, 2010; nbcnews.com: Earliest traces of a disabled, aged human found)

Disability is an impairment that loosely falls into several categories including intellectual, mental, physical, developmental or sensory; it is not uncommon for a person to have one or more impairments, resulting in a restriction of a person’s capability to participate in ‘normal or standard’ daily activities in society.

Intellectual disability may be the result of a genetic condition, complications during pregnancy and birth problems, disease or illness, or environmental factors such as drug use, accidents, neglect, and so forth. In the early 1980s a friend of mine who was in high school and for all practical purposes was normal, drove on the highway while intoxicated and high on drugs, he crashed his vehicle and was then taken to the hospital. He left the hospital with the intellectual capacity of an eight-year-old child and there was no cure in sight for his predicament. Another case involves an acquaintance of mine who was diving into the ocean from sand dunes. He broke his neck and ended up paralyzed from the waist down unable to control his bowel or bladder movements, and lost much of the mobility in both of his hands.

Physical disabilities can be physiological, functional, mobility and/or flexibility impairments, which can fluctuate or can recur periodically, be chronic, worsen or remain stable, and may be apparent or non-visible the pain may be non-existent, minimal, moderate, severe, or profound.

Mental health disabilities can include schizophrenia (very serious), mood disorders (depression, bipolar, anxiety disorders (panic disorders and phobias), eating disorders (anorexia nervosa, bulimia, or both), personality disorders (inflexible and unhealthy pattern of thinking, functioning, and behaving, usually have a hard time getting along with other people), organic brain disorders (Alzheimer’s, stroke, dementia or alcohol-related dementia, trauma).

Fragile X Syndrome (FXS) is the most common worldwide cause of an inherited intellectual disability. Persons born with FXS may suffer from a sweeping range of physical, developmental, behavioural, and emotional adversities. Typical signs include a developmental interruption or setback, intellectual disability, obstacles in communication, anxiety, Attention Deficit Hyperactivity Disorder (ADHD), autism-like behaviours, troubles socializing with others, difficulty processing sensory information, and inhibited eye contact. FXS is more common in males than in females.

Down syndrome is not a disease, it is a chromosomal disorder caused by an error in cell division resulting in an additional 21st chromosome. This condition leads to defects in both cognitive and physical growth that range from slight to moderate developmental disabilities.

Infants with Down syndrome are born with a mild upward slant of the eyes, a rounded face, and curtailed stature (short height), curbed muscle tone, short and broad neck, short and stocky limbs, nasal bridge that appears to be pushed in; abnormally shaped tongue, mouth, and teeth, and a greater likelihood of health-related problems.

It is normal for children to develop and mature at different rates, however some children take a noticeably longer time to develop and mature in areas including movement, learning, talking and/or behaving. Note that some children may take a bit longer to reach these milestones and are not handicapped or disabled in any way, shape, or form. Developmental delays are different from other kinds of delays in that they can improve or even disappear all together with proper and correctly timed intervention.

DEVELOPMENTAL DELAYS MAY OCCUR FROM THE FOLLOWING:

  • Problems or difficulties at birth
  • Down Syndrome and other chromosomal or genetic-based problems
  • Autism
  • Cerebral palsy
  • Serious medical problems following birth
  • Fragile X syndrome
  • Vision or hearing loss
  • Brain or bodily trauma (accidental, deliberate, or through negligence)
  • Foetal alcohol syndrome (FAS) or other drug induced problem
  • Child abuse, neglect, malnutrition

Prader-Willi Syndrome is a rare and complex genetic disorder that touches affects parts of the body. Infants may suffer from weak muscle tone (hypotonia), eating problems, curtailed growth (short stature), small hands and feet, narrow head, fair skin and light hair, triangular mouth and thin upper lip, underdeveloped genitals, delayed or deficient puberty, many are infertile . At the outset of childhood, children affected by this syndrome will develop a glutinous appetite causing habitual overeating (hyperphagia) and obesity; type 2 diabetes mellitus affects some sufferers.

Common symptoms of Prader-Willi syndrome include mild to moderate intellectual impairment and learning difficulties, behavioural issues are common, including outbursts of anger and frustration, stubbornness, compulsive behaviour, and a possibility of sleep problems.

FAS results when a pregnant woman consumes alcohol, which easily traverses the placenta to the uterus. The developing foetus cannot process the alcohol with the same efficiency or manner of an adult, and worse yet the alcohol is more potent in the foetus, potentially blocking some of the nutrition and oxygen from reaching its vital organs. Damage can occur as early as the first few weeks of pregnancy when many women do not know they are pregnant. Environmental factors are extremely important for both the unborn, newborn, and a person throughout his or her life. Exposure to toxins, illicit drugs or alcohol, trauma and accidents, disease and illness-related problems, and malnutrition are dangers that should not, be ignored.

THE FOLLOWING ARE DIFFERENT KINDS OF FAS (REFERENCED FROM HEALTHLINE.COM: FOETAL ALCOHOL SYNDROME):

  • Foetal alcohol syndrome (FAS)
  • Partial foetal alcohol syndrome
  • Alcohol-related birth defects
  • Alcohol-related neurodevelopment disorder
  • Neurobehavioral disorder associated with prenatal alcohol exposure

Autism is a disability with indications that vary across a broad spectrum. Persons with autism generally do not have any extraordinary physical attributes that identify them as sufferers, however, they frequently have difficulties in communicating with others, language, social proficiency, and behaviour usually resulting from sensory problems. Autism ranges from mild to severe, with the latter sufferers are likely non- verbal and oblivious to other people. Mild autism sufferers may appear to be quite intelligent but have unusual peculiarities when socializing with others. The majority of autism sufferers are in the middle ground. Note: A complete physical exam should be performed before a diagnosis of autism is made to rule out a medical or sensory cause for the autistic-like behaviour.

AUTISM SUFFERERS MAY MANIFEST THE FOLLOWING BEHAVIOURS:

  • Repetition of words and phrases, frequently out of context
  • Lack of understanding of non-verbal communication
  • Less reactive to requests
  • Laughing, crying, or showing other intense emotions out of context and without any apparent reason
  • Lacking the ability to follow multiple instructions
  • Problems conveying their feelings to others
  • May prefer to be alone, deficiency in social skills
  • Lack of eye contact or applying non-verbal communication
  • Cannot perceive or understand imminent danger

Disabled persons may be prone to additional illnesses, some of which are chronic. Chronic illnesses can occur at any time throughout a person's life. There are no guarantees even for a healthy person who takes care of her or himself, however, the disabled need to be extra vigilant and careful, and so do their caretakers and family; people who are severely disabled may not be able to correctly or adequately communicate their feelings which makes matters worse. Caregivers and family members of the disabled person must keep an eye out for unhealthy symptoms especially new ones. Chronic illnesses have an adverse effect on physical and emotional well-being, finances, and social relationships, which may lead to increased dependence, isolation, fear, anxiety, and frustration.

THE FOLLOWING ARE WAYS TO HELP A PERSON DEBILITATED BY DISABILITY AND/OR SERIOUS CHRONIC ILLNESSES:

  • Acquire knowledge about the illness, how it affects people especially those who are disabled, and medications used
  • Show empathy
  • Understand the special needs of the person
  • Consider the whole person rather than just the illnesses or limitations; you are dealing with a full-fledged human being irrespective of his or her health and mobility status
  • Help the person preserve and guard her or his dignity and feelings of self-worth
  • Try to maintain a positive attitude; maintaining a negative attitude will harm the caregiver and disabled person
  • If you have spiritual beliefs (GOD) pray for the person and together
  • If possible, try to discover opportunities for the person to contribute to family and society; this will help harness healthy self-esteem. No one wants to be useless and to do nothing throughout the day
  • If the person is hospitalized, regular visits and manifesting a positive attitude during every visit is imperative

Although the aforementioned information paints a benevolent attitude towards disabled people, historically, hostile actions and attitudes were and still are commonplace. Beginning thousands of years ago, trepanning, also known as trepanation, trephination, or trephining, or making a burr hole, is a surgical intrusion that involves the drilling or scraping of a hole into a human skull. The sought after result was to allow the evil spirits that caused the particular illness to leave.

In Sparta, a warrior culture and society in Ancient Greece, reaching its prime following its victory over the city-state of Athens in the Peloponnesian War (431-404 B.C.), the state decided whether weak or disabled children were to raised or abandoned to die. Children were the property of the state, not the parents. It was the law to abandon disabled infants in this combative society there was no room for weakness. In order to prevent escape through the hands of overly loving-caring parents every newborn was examined by the community elders, the child had to appear strong and healthy.

Particularly in the early period of ancient Rome the father's power and authority over his family was uncompromising and practically limitless. He had the right to abuse, mutilate, torture, kill, or sell his children. The closest word to disabled used in this society was 'monstrum'. A child born with a disability was believed to be an adversity and divine punishment from the Gods many disabled children were dumped and left to die physical. Physical strength and athleticism were considered manifestations of Gods' goodwill. However, some exceptions were made, not for the sake of the primary victims (infants with disabilities) but for the sake of the wealthy parents. Nonetheless, these infants were not considered persons but property of the wealthy parents.

Romans believed that people with disabilities were sub- human. Disabled infants were considered a misfortune and were deemed not worthy of the financial expense and troubles of being raised; any perceived abnormality was a possible reason for infanticide, some infants were healthy but manifested a visible anomaly.

{In ancient Rome} "Intersex infants were killed shortly after their births. Their murder usually involved an ‘expiation’ ceremony, a ritual carried out to appease the gods. The baby would be placed in a box and drown at sea (or in one instance, a river). Prior to the baby’s disposal hymns, dedicated to Ceres and Persephone, were sung by 27 virgins and sacrifices were made." (By Will Reckase, May 15, 2013; rootedinrights.org: Disability in Ancient Rome)

Aristotle (384 – 322 BC) the renowned Greek philosopher and scientist, born in Stagira, Chalkidice, in classical Greece, had by today's standard a cold-blooded, callous attitude about disabled people: "Let there be a law that no deformed child shall live." (catherineshafer.com: HISTORY of how we treated people with disabilities)

The early Mesopotamians (from the Greek, meaning 'between two rivers') an ancient region in the eastern Mediterranean understood that some people were less fortunate than others were because they were born with certain shortcomings and physical impairments.

The Sumerian creation myth of Enki and Ninmah addressed this ordeal and attributed an array of disabilities to the early failed attempts of creating humans by the Creator Goddess Ninmah nonetheless these failed attempts continue to be part of the creation process.

Ancient Egyptian society as a whole did not treat people with disabilities in a hostile manner, in fact, they were part and parcel of society; for instance, dwarfs were held in high esteem. Some dwarfs had the honour of working as assistants to the Pharaohs and yet others were considered deities. Tolerance of people with genetic and medical disorders was the norm.

19th Century England witnessed a significant increase in the number of buildings, including but not limited to those designed specifically for disabled people, commonly referred to as asylums. Ancient fields and villages were replaced with towns and factories, rail lines, the population of cities swelled.

The 1834 Poor Law Act induced the creation of 350 workhouses, about one for every 20 miles (32.2 km). Initially, the workhouses housed poverty-stricken disabled people, designed to remove bums and panhandlers. Unfortunately, workhouses were horrible and filthy places to live in, with bitter work conditions. As such, able-bodied poor evaded them if they could, paving the way for the disabled and mentally ill to move in.

By 1900, over 100,000 ‘idiots and lunatics’ lived in 120 county pauper asylums, an additional 10,000 lived in workhouses. Society in general believed that granting financial relief to people in their own homes would encourage laziness.

Most people at the time were ignorant of or did not care about the ill effects this attitude inflicted on the mentally and physically disabled. A new category of professionals emerged known as ‘alienists’, later known as psychiatrists.

Nevertheless, many disabled persons remained in their communities, special schools and numerous charitable organizations were created. A social club exclusively for disabled persons called The Guild of the Brave Poor Things opened a branch in 1894 in Bristol, England. Members were given a bright red coloured membership card beautified with the log, “A crutch crossed with a sword – and the motto ‘Laetus Sorte Mea’, which translated from Latin as ‘happy in my lot’.” (History of Place: GUILD OF THE BRAVE POOR THINGS).

A century ago, being visually impaired almost certainly entailed being forced to live a life of limited movement and travel and institutionalization. It was atypical for visually impaired persons to embark on receiving a good education and employment. Commonly perceived as helpless by society and a strain and tedious responsibility by the family, the idea of having a family and living a fruitful and independent life was a fantasy. Thanks to the hard work and dedication of the visually impaired and non-visually impaired great strides have been taken to better the lives of these people by the acquisition of Braille, user-friendly technology, independence, laws protecting the visually impaired against discrimination and the proper tools to aid in daily living .

Some visually impaired persons feel that they are forced to take legal action against companies, organizations, or institutions that discriminate against them. In April 2015, a California court ruled that Uber, a ride-sharing service, would face a lawsuit alleging the company has at times discriminated against blind people by refusing service to passengers with guide dogs. A San Jose magistrate judge ruled that the plaintiffs could argue that Uber is a 'travel service' subjected to the boundaries of the Americans with Disabilities Act (ADA). Uber had 2 weeks to answer to the complaint.

Uber stated that their drivers are told that it is policy to abide by all laws related to the transportation of passengers with service animals. The plaintiffs claim that there are at least 40 incidents when blind passengers with service animals had been denied service and that some drivers yelled 'no dogs' to prospective passengers. In one particularly troubling case, the plaintiffs claim that an Uber driver refused a blind woman's appeal to pull over after she discovered that her dog was locked in the vehicle's trunk. Uber has also received worldwide complaints concerning its drivers' pay and passenger treatment.

Following the loss of her vision, 19 year-old Molly Burke was catapulted into an even darker place, she has been victimized and bullied, and wants to give hope to people who have been victimized and to show them how to fight back. Molly gave a speech in front of a packed gymnasium at St. Joseph's College, a girl’s school in Toronto, Canada.

Molly is petite and short, standing at about 5 feet, with good features and has long dark hair; she was wearing a cautious smile. Microphone in hand, she faces the audience, estimated at 650 girls wearing navy sweaters, she begins by describing what it is like to not be able to distinguish between shampoo and conditioner in the shower or to see your reflection in the mirror. That was the easy part; the bullying stories were more difficult to talk about, especially one particular case, which made her contemplate suicide.

Molly was not born blind. She and her brother Brian were born in a beautiful two-storey house in Oakville, Ontario. As a child, Molly enjoyed climbing structures in the playground, was an energetic soccer player, and rode her two-wheeler around the neighbourhood, but during childhood, visual problems became apparent. When she was a toddler, her depth perception was not normal, when she reached for something it was common for her to miss. She often bumped into things and did not have good night vision.

According to Molly's mother, Niamh, “Molly always wanted books held close and under a light when we’d read to her ... I found myself hanging a little closer to her - it was just an instinctive feeling that I had to be nearby ... I asked one doctor what we should do and he said, ‘Well, just give her more light’, ... So we thought, ‘Okay, that’s simple, we’ll give her more light’.” (By Sydney Loney, March 22, 2013; chatelaine.com: Blind and bullied: She lost her sight and then things got worse)

A good indicator of things to come occurred when Molly was four and a half years-old. Freckles were spotted behind her retina the diagnosis was retinitis pigmentosa, a group of eye diseases that usually run in families and cause slow, but progressive loss of vision. Molly's father, Peter, said that he was very sad, and was wondering about whether she would be able to see her own kids' faces. Molly's parents attempted to make her life as normal as can be, naturally it was a very difficult task. Things that other kids took for granted like running and playing became increasingly difficult for Molly.

According to Molly's mother, “Halloween just seemed to tear at our hearts the most ... No matter how happy and okay we tried to make it; it always seemed a little sad and lonely." But they took the advice of their daughter’s doctor, letting Molly decide what she could — and couldn’t — do, and when it was time to give up the things she loved, like soccer ... We’d start thinking, ‘What activity can she do now that she can maybe do for the rest of her life?’ ” (ibid)

All was not bad, at therapeutic camp Molly was taught how to ride a horse and attended ski school, activities she truly enjoyed. Things appeared to be improving until one day, she was running  with her  friend in  the  playground and  suddenly she crashed  into a  metal  pole,  face   first; worse yet, everyone around her ran around  the  pole. This was  a truly devastating event, inducing sleeping problems for Molly; her confidence was shattered and made her understand that she was vulnerable. Soon thereafter,  when  the other  students at school began to learn French she was taken to a special class to learn Braille.

Braille is a system of raised dots that is read by people with limited vision or the blind people who have decent vision can read Braille with their eyes, Braille, an elaborate and revolutionary system of reading, was invented by Louis Braille, born in Coupvray, France (January 4, 1809 - Jan 6, 1852).

Unfortunately, Molly's vision continued to deteriorate. By the time she was 13, she had no colour vision, her world became increasingly gloomy and strange, sunny mornings began to look more like sunset. More