Living with Disability Essay

This essay analyzes the experiences of two individuals living with disabilities, Norman with Down syndrome and Jill with brain damage. It examines their family situations, the attitudes of those around them, the different environments they lived in, and the societal perceptions of intellectual disability. The essay highlights the impact of societal attitudes and environmental factors on their lives and well-being.

LIVING WITH
DISABILITY

Table of Contents
INTRODUCTION...........................................................................................................................3
Family Situations.........................................................................................................................3
Attitude of different people playing an important role in their lives...........................................4
Different environment they lived in.............................................................................................5
Society in which they are brought up and are living in...............................................................6
Contemporary cultural perceptions with the label intellectual disability....................................6
REFERENCES................................................................................................................................8

INTRODUCTION
The life of a disabled individual may vary based upon the environment in which the person
is living. The report discusses regarding two individuals, who have been able to live in totally
different environment with completely varied life experience. The story of a female, Jill, will be
discussed in the project that was born with brain damage. The transition of two environments
will effectively be discussed in the report. It will then discuss the condition of a male individual
Norm, who was born with Down syndrome and his life situation in which he lived.
Family Situations
In first documentary, it is identified that the patient named Norman Lewellyn was born in
the family of Young entrepreneur named Charles Lewellyn who is the former owner of Wandlyn
Inns. He was born in Sept 1949 in to the family of Entrepreneur in the New Brunswick, Canada.
The patient was born with a major disease of down syndrome and at the age of 7, he was sent to
the fast track supervision by his parents for treatment. At that time, the situation of their family
was not critical and due to influence of some people in society, Norman's parents made
arrangements to send him in special school (Palomaki & et.al. 2012). He was having 3 brothers
and a sister, who was adopted by her parents. During that era, the children like him used to not
live above the age of 15 years. Like other children, Norm also spent his childhood with parents
but later he was put in to the foster care.
Down syndrome is considered as very notorious disease or psychological disorder. It is a
condition in which a child is born with an extra copy of its 21st syndrome. This usually causes
physical and mental development delays and disabilities (Down syndrome, (2017). Study provide
an understanding that Norman faced both physical and mental disabilities due to which he had to
go through many problems in his life but her sister Karen provided care and support to improve
his conditions.
Jill is a girl in the documentary who was born with brain damage. She has a younger sister,
father and mother in her home. She was transferred to a care home which meant for people with
disability at the age of 8 as they were not able to fulfil her different requirements. Although she
was able to gain adequate amount of love and care, after leaving her to the care home, there are
only few incidents mentioned when she was actually visited by her family. Soon after Jill’s
transfer to care home, her parents got divorced and concern towards her got reduced. Her mother
and sister stated that if she had lived with them and not shifted to the care home, her condition
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would have been comparatively better. Then, at the age of 40 she was taken back home by her
mother and sister (Bigby, Bould and Beadle-Brown, 2015).
Attitude of different people playing important roles in their lives
From the documentary, it was identified that Norman's sister has played an important role
in his lives because she has provided with all care facilities that can support him. Norman was
put in to foster care for about 20 years were he faced various issues but his situation was not
improved. It was a private care home for children having these problems. Attitude of family
members towards Norman was proper and good which provided him support in facing physical
and mental disorder (Shi & et.al. 2012). Various critical situations have been faced by Norman
due to his disorder and a therapist was also appointed by his sister which usually takes care of
him every day. Attitude of other people like his friends and relatives were also good and
supportive towards him. His parents got passed away last year which provided an influence on
his mental health. His mother was having a caring attitude towards him and she got information
about this disease after six months of his birth.
Norman had an effective understanding about his daily activities which he needed to
perform and also had information about therapies provided to him by his doctor (Benn & et.al.
2012). The doctor has also provided major focus on improvement of his condition and provided
effective care facilities. He was not left alone in house at any point of time and somebody
always used to remain there in the house for his care. Sign language and other soft skills were
used by his family to understand his requirements and communicate with him properly.
However, it can be said that positive attitude of his family and friends played an important role in
Norman’s life.
There are various people who played an important part in Will’s life. These people are her
mother, sister and people who took care of her in the care home. Her mother got her transferred
to a special care home to serve her requirements. The attitude of people towards her was not
appropriate. She faced sexual assault in the home which made her pregnant. In order to hide the
mistake, they got hysterectomy done. She was kept on numerous medicines which were not
actually required for the health condition she was dwelling in. It deteriorated her health in the
form of losing ability of balance. She was also kept on G tube through which all her food and
water were directly tranferred to her stomach. Her condition in special ability home was
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ineffective which made her even more dependent on people (Mansell and Ericsson, 2013). She
got psoriasis all over her body due to the mistreatment she received in the group home.
If she had not been restrained or over medicated, her condition could have been rather
more effective. It can be stated that the attitude of people towards her was not appropriate and it
is due to this, her living conditions immensely deteriorated.
She was brought back to home, at the age of 40 where, she was given good care by her
sister and mother. She was then able to live happily with love and care she received from them.
Their attitude towards Jill was very caring. The various years of neglect and lack of brain
stimulation made her condition worse in the special home. However, being at home, helped her
live a happy and independent life where, she can feed herself, walk and play as well. Her
medications got reduced and her G tube was also removed.
It can be stated that people with intellectual care requires attention from the side of family
and society which cannot be received at the special home where she was actually kept.
Different environment they lived in
Norman and his sister always lived in different cultural and positive environment where
they have achieved support from other people in managing their work. Norman lived in two
different environments such as Foster care and familiar setting. In care home, Norman was
provided clinical treatment properly which used to make her loose her temper and some time
create problems as well . People at that time were usually having feeling of being ashamed when
children with these types of diseases were born in their families (Malt & et.al, 2013).
Professionals in home care has also provided focus on his treatment and always tried to make
him feel happy. Environment of care home was little challenging for Norman to survive as other
patients were used to make fun of him.
At home, proper and effective communication for Norman was there with his sister and
other family members. His sister has also faced various difficulties in managing his treatment
and routine checks with the doctor. Positive and familiar environment at home supported him to
face symptoms of Down syndrome such as flat facial features, Anxiety, stress, poor muscles.
Apart from down syndrome, professional has also identified that it was diabetes which has
affected his treatment.
In second case, there are two types of environment where Jill actually lived. One was the
place, called group home, where people with the same type of disabilities are kept together and
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given care and the other with her family. However, the treatment that she received in the group
home was devastating. She was physically, sexually and mentally abused, which made her
pregnant as well (Sjölund and von Strauss, 2014). Her ovaries, uterus and fallopian tubes were
removed stating that she was suffering from cancer. She was kept on 25 drugs, which she had to
continuously take every day. She was restrained from activities which made her dependent on
wheel chair to walk. She was fed with the help of G tube and no food was provided through
mouth, which made her condition even worse. Altogether her living condition in-group home
was not appropriate and made her medical conditions even worse.
After she reached the age of 40 years, she shifted back with her mother and sister. The
environment that she received there was full of love and care. She used to play every
daywhereshe learnt to walk and run. The love she received from her family helped her in getting
independent to a certain state and lives in a better condition. Hence, it can be stated that the
environment was totally opposite in the two stages of Jill’s life (Garland-Thomson and Grumet,
2012).
Society in which they are brought up and are living in
In these type conditions, the Society plays an important role in creating challenges or
supportive environment. It is one such aspect which always forced Family members of Norman
to get their disabled children transferred to foster care. In the case of Norman, people in society
were having thought that individual with this kind of disease will not live more than 35 years.
These patients should normally be transferred to care home where they will get other patients
having similar diseases (Shi & et.al. 2012). During that time, family members of Norman had
felt shame of his birth but they always tried to remain positive in society. There are people in
their society who forced his family members to admit Norman in fostering care for getting
special treatment. After changes in environment and increase in possibilities of recovery of
patient from this type of disease to familiar environment, thinking of people towards Norman has
been changed.
Society is one such aspect which forces families to get their disabled children transferred to
a group home. In the case of Jill as well, it was the societal pressure as well condition of the
home that forced her mother to admit him into a group home. During that time, it was actually
believed that children suffering from intellectual disability must not be kept at home and must be
admitted to group home for special care.
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Contemporary cultural perceptions with the label intellectual disability
Intellectual disability is considered as mental health issue which are generally faced by
children of this kind of symptoms such as problem with skill in language, reading, writing,
mathematics and other issues as well (Palomaki & et.al. 2012). It is also considered as genetic
disease which can be transferred to children from their parents. Usually this kind of disease is
found in children with premature birth.
The cultural patterns and ideas related to intellectual disability may vary. People suffering
from any type of disability can face different perceptions and the actions of parents have high
dependence on it. It decides that what type of treatment will actually be received by the
individual with respect to the disease one is suffering from (Mackelprang and Salsgiver, 2016).
In some culture, attitude towards disability may involve religious acceptance. However, in other,
it is considered as an influence of past lives.
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REFERENCES
Books and Journals
Bigby, C., Bould, E., & Beadle-Brown, J. (2015). Living with Disability.
Mansell, J., & Ericsson, K. (2013). Deinstitutionalization and community living: intellectual
disability services in Britain, Scandinavia and the USA. Springer.
Sjölund, B. M. & von Strauss, E. (2014). Time trends in prevalence of activities of daily living
(ADL) disability and survival: comparing two populations (aged 78+ years) living in a
rural area in Sweden. Archives of gerontology and geriatrics. 58(3). 370-375.
Garland-Thomson, R., & Grumet, M. R. (2012). Teacher's Body, The: Embodiment, Authority,
and Identity in the Academy. SUNY Press.
Mackelprang, R. W., & Salsgiver, R. (2016). Disability: A diversity model approach in human
service practice. Oxford University Press.
Palomaki & et.al. (2012). DNA sequencing of maternal plasma reliably identifies trisomy 18 and
trisomy 13 as well as Down syndrome: an international collaborative study. Genetics in
medicine, 14(3), 296.
Shi & et.al. (2012). A human stem cell model of early Alzheimer’s disease pathology in Down
syndrome. Science translational medicine, 4(124), 124ra29-124ra29.
Benn & et.al. (2012). Prenatal Detection of Down Syndrome using Massively Parallel
Sequencing (MPS): a rapid response statement from a committee on behalf of the Board
of the International Society for Prenatal Diagnosis, 24 October 2011. Prenatal diagnosis,
32(1), 1-2.
Malt & et.al, (2013). Health and disease in adults with Down syndrome. Tidsskrift for den
Norske laegeforening: tidsskrift for praktisk medicin, ny raekke, 133(3), pp.290-294.
Online
Down syndrome, (2017). [Online]. Available through:<https://www.healthline.com/health/down-
syndrome>
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