The Concept Of Disability

Published Date: 02 Nov 2017

Introduction

People who blind are faced with challenges due to their physical impairment on a daily basis, however, the blind are also faced with social inequalities, prejudice and stereotypes from society and government. This type of discrimination towards people who are different can be seen from a historical, demographical, political, ideological and social perspective. Furthermore, social exclusion and discrimination against the blind impacts differently on each individual’s life. This paper aims to provide a brief history and overview of blindness as a disability, provide a theoretical background using the social model of disability and then link the social model to the actual life experiences people who are blind face.

Literature review

The concept of disability was created in the 20th century to characterise people who have physical or mental alterations in to a group that is different from the norm (Bampi, Guilhem, & Alvis, 2010). Definitions of blindness vary greatly, with there being different degrees of blindness ranging from complete blindness, to visual impairment (partial blindness), to colour blindness, night blindness, emotional blindness and so forth. For purposes of this study, there will be a focus on complete blindness, that is "total vision loss and for conditions where individuals have to rely predominantly on vision substitution skills" (International Council of Ophthalmology, 2002). However, to determine who may need special assistance due to their visual impairments, various governments have devised more complex definitions of blindness which is referred to as legal blindness

Historically, from primitive times people who were blind were not regarded as being of any value in society (Omvig, 2012). They were not seen as being able to fend for themselves or provide for anyone else. In primitive societies, it is believed that babies that were born blind were either put to death or abandoned and left to die, while those that survived were sold in to slavery and prostitution, or were forced to beg (Omvig, 2012). There was also the misconception that killing the blind was a divinely inspired punishment, which can be inferred from the various early religious transcripts which solicited for people to show more kindness towards the blind (WHO, 1997). During the middle ages, it was the general consensus in society that people who were blind or had any form of disability were to be marginalised, disregarded, and often even used for entertainment purposes. With regards to education, blind individuals in the past were taught what was considered to be trades for the blind such as chair caning, basket weaving, and rug weaving (Omvig, 2012). Thus they were not considered as being capable of performing at the same cognitive or functional level as their sighted counterparts.

The earliest medical records found with regard to blindness dates 5000 years back, coming from the river cultures of Mesopotamia (WHO, 1997), showing that medical care for the eyes does date back to ancient times. The first school for the blind however was established only in 1784 (Omvig, 2012), followed thereafter by a slow but positive recognition of the blind as a part of society.

In present times, equality with regard to the legislation towards the disabled has been endorsed, however, socially not much has changed. While the importance of blindness with regard to demographic and socio economic determinants has been acknowledged, there is insufficient quantitative research in to the nature of association of these determinants in different settings. According to the Wold health Organisation (2012), there are approximately 39 million people who are blind worldwide, with 90 percent coming from developing countries, due to the fact that poverty and socio economic status are related to access to and quality of healthcare.

Trachoma, vitamin A deficiencies and diabetic retinopathy are diseases that can lead to blindness, and has been found to be more common among the lower socio economic class (Dandona & Dandona, 2001). Trachoma is an infectious disease that is the leading cause of blindness, with approximately 40.6 million people being infected with the active disease worldwide (Mathew, Turner & Taylor).

The highest prevalence of blindness is found to be in Africa, supporting the link between poverty and blindness. According to Dandona and Dandona (2001), in the poorer, developing countries blindness is the result of "corneal scarring due to vitamin A deficiency, measles, ophthalmia neonatorum, and use of harmful traditional eye practices, all of which are preventable causes of blindness." However, in first world countries, central nervous system disorders and retinal conditions are the most common causes of childhood blindness, which are not preventable. This suggests that avoidable blindness is most common in developing countries, therefore implying poor access to quality healthcare facilities. A cycle can be noted, with the risk of becoming blind increasing with poverty, and becoming blind subsequently reducing opportunities of maintaining employment (Cockburn et al., 2012).

It was estimated in 2005 that there were 17 million people worldwide who were blind due to cataracts that are treatable (Kuper & Foster, 2005). In the study by Kooper and Foster (2005), it was also found that up to 75 percent of blindness is avoidable, however remains untreated. A lack of human resources in developing countries, that is trained people such as doctors and medical staff, is a major contributing factor to the high percent of avoidable blindness reported. Furthermore, developing countries may feel more inclined to direct their limited financial resources towards medical crises such as HIV/AIDS and tuberculosis. In addition to this, there are limited research studies and data available on the prevalence and causes of blindness in most developing countries.

Also related to poverty is the construct of education, which correlates with knowledge and awareness of eye conditions and services offering treatment. Education therefore has been found to be a determining factor with regard to blindness, with no education resulting in a risk of becoming blind being 3 times higher than those with education (Dandona & Dandona, 2001).

An important aspect is the consideration of gender and blindness. Considering the fact that women face more social, economic, political and cultural discrimination than men, it should come as no surprise that there are more women who are blind than men. Women make up 64.5% of the blind population (Dandona & Dandona, 2001), suggesting that due to already prevalent discriminations based on sex among societies worldwide, women are more likely to become blind than men.

The emotional impacts of sight loss are vast, with depression and lower morale being the main effects (Thurston, 2010), resulting in feelings of loneliness and isolation emerging as common factors among people who are blind. Even though there is ample evidence connecting negative emotional states and social impacts for people who are blind, research in this area also remains scarce.

A study conducted by Thurston (2010) involved 18 participants, all of whom were sighted and became blind during the course of their lives. One of the aims of this study was to find out what effects the emotional transition in to blindness had on the participants. Blindness, being a marker of diversity, brought these participants from what was considered by social standards a ‘normal’ life to suddenly having to face living a life very different from what was known to them. Upon being told that they have been diagnosed with a disease that will soon cause them to become blind, participants noted feeling shock, panic, fear and disbelief.

From independence, people who become blind experience a sudden lack of autonomy (Thurston, 2010). This leads to them feeling clumsy and frustrated. Socially, Thurston (2010) found that people who are blind feel excluded, patronised, vulnerable, and experienced being perceived by others as having a low level of intelligence. It has also been noted that participants felt a lack of support not only from society, but from the health professionals they encountered as well. The participants in Thurston’s study (2010) all reported a feeling of loss, suggesting a link to the social model of disability, with the basic idea being that it is society that disables a person.

Methods of coping with this form of social exclusion and emotional consequences, as noted by Thurston (2010) is "having a religious faith, being socially integrated, having choices, not feeling limited, feeling fulfilled, having autonomy, achieving success, being positive, changing their attitude to life, having determination and having a good role model." People who face the transition from sight to blindness have to make sense of and accept their condition on 3 levels "intellectually, practically and emotionally" (Thurston, 2010).

Discussion

In present times, people with disabilities are a minority, and are often still stigmatised. There has been very limited research done based on people with disabilities, specifically with regard to blindness. People with disabilities are often hidden from society, and their concerns are not often highlighted or given national priority.

Having any form of disability or social difference makes an individual a part of a minority group as opposed to what society depicts as ‘normal.’ In most societies, individuals with any form of physical or mental abnormality are considered inferior. People who are different are constantly faced with stereotypes, prejudice and difficulties from society. The definitions of ‘disability’ are broad and often contested by theoreticians of various categories. Different models try to explain the changing social perceptions about people with disabilities. These definitions impact on the lives of people with disabilities as it affects their self image and self esteem. This paper will focus on the social model of disability, which depicts how society brings about marginalisation of people with disabilities, with little consideration given to the emotional and social hardships disabled people have to face.

The social model of disability varies greatly from the previous widely used medical disability model. The medical disability models primary focus is on the physical aspects of the disability, and all individuals who are affected are referred to as patients (Scullion, 2009). This model defines individuals by their disability, with a low social standing in society Medical terms used to describe people with disabilities become their label, and these terms soon become their identity. When a person becomes disabled, medical staff such as doctors and nurses play a huge role in helping them discover their self image (Scullion, 2009). A diminished quality of life is seen as arising in disabled persons solely due to their medical condition, and emphasis is placed on enhancing healthcare facilities and in helping disabled patients solely in medically related ways. The medical model tends to ignore the subjective social experience of people with disabilities and focuses primarily on the medical connotations by attaching diagnostics labels.

The social model of disability arose in the 1960’s in opposition to the medical model, both theoretically and politically. The social model looks at disability not as an individual problem, but rather as the responsibility of society to adapt and adjust to a persons physical limitation in terms of their diversity (Bampi et al, 2010). This model saw the lowered status of people who were disabled arising not from their actual physical limitations, but rather from social barriers and stereotypes created by society. The social model addresses disability as a collective form of discrimination and oppression by society. Therefore, the solution to inequalities and conflicts relating to the disabled lies not in therapeutics, but instead in political action (Bampi et al, 2010).

While the social model still welcomed medical advances to improve the wellbeing of the disabled, according to Bampi et al (2010) resistance existed regarding large scale medicalization, which focused only on treatment, in which disabled individuals were seen as victims without autonomy. Therefore theoreticians of the social model seek to rectify the social structures which reinforce the disability.

All disabled people experience exclusion in their daily lives, some examples of these in the South African context are: there are many inaccessible environments that do not take people in wheelchairs in to consideration; stereotypes exist regarding the social competence and intelligence of individuals with disabilities; hostile attitudes and prejudice towards people with disabilities are rampant from people who are considered ‘normal’; and lack of Braille material on products and documents for people who are blind or visually impaired. For theorists of the social model, this sort of discriminations is what defines a disability, thus excluding them from conventional social activities.

According to Ghosh (2012) "Disability is equated with helplessness, dependency and incompetence at all social interactions, and disabled people are subjected to isolation, lack of social support and social networks, low social esteem and a concomitant feeling of powerlessness." The identity of the disabled person exists separately from all other identities because culture and media portray exaggerated stereotypes as the norm for all disabled people. Furthermore, disability in a capitalist society is viewed as something that needs to be prevented, treated, cured and eradicated (Ghosh, 2012). The social model has been able to bring about equal rights and anti discriminatory laws for people with disabilities, as well as better services and facilities to better accommodate for differently able’d people. Thus the social model focuses more on empowering people who are disabled, promoting a different self understanding and identity, as well as aiming to focus attention on changing society’s negative perceptions of people with disabilities.

With regard to the social model of disability and blindness, it has been argued that the term the blind "places a barrier between our ability to empathize with another human being who may just happen to be unable to see, but who is otherwise embedded in the same human condition as ourselves" (Dodds, 1993, p. 5). In society, people who are blind are not often referred to as ‘us’ or ‘we’, but rather as ‘them’, thus creating psychological barriers and excluding them from being a part of ‘normal’ society.

A qualitative interview was performed for this study with a woman named Saffura Khan, who was born completely blind in 1959 into a family of 9 siblings. She schooled in Pietermaritzburg, at the Arthur Blaxall (New Horizon) School for the blind and completed her National Senior Certificate in 1978. She proceeded to study her BA degree at the University of Westville and thereafter decided to study Freelance Journalism.

When asked in what ways does she describe herself with relation to her identity and who she is as a person, her response was as follows:

"I feel like I have two identities, a public and a personal identity. I am a public figure, I’m the president of Phoenix light group, I’m a facilitator, I’m a motivational speaker, I have a company that I run called sound success, with different motivational sessions on self successful management, the power of positive thinking and self potential, I also run workshops and I’ve had two successful motivational dinners, and I am now in the process of writing my very own book which is called The Journey of Life. I feel like publicly, being blind has been a blessing for me because I can voice my opinions very loudly without being intimidated by anyone else since I cannot see facial expressions. I’m someone that people can identify with in terms of my service to community, which has been my passion since I left school. I feel like I want to be heard and I want to be known. I feel special in having my disability, but I feel like I’m always finding myself having to fight for equality with my sighted counterparts. I don’t want my blindness to be an excuse to undermine my work, I like to produce equally good results as my sighted counterparts. With regard to my identity in terms of who I am and how I feel and why I’m here, I feel like blindness is not a disability, it’s a limitation, and I think everyone has challenges in their lives, whether you are able’d or disabled, and the ability to overcome it and to be equal with everyone else is what I strive for everyday."

When asked which of the identities she mentioned are more important to her and why, her response was:

Definitely my self identity, because if I don’t feel good about myself from the inside, from within, then my outside will be bad. At the end of the day, how I handle situations and how I feel about controversial issues is more important than what the public feels.

From her response, the theme of wanting equality can be picked up very strongly. Ms Khan does not want to be treated unjustly, nor does she want to be patronized because of her disability, instead she wants to be treated equally as a part of society, and her achievements to be due to her hard work and dedication, not due to the fact that she has a disability. This can be linked to the social model of disability in that she wants to be treated fairly by society, not made to feel different or treated as an outsider.

She also makes not of the fact that being blind has been a blessing for her, in that it has pushed her to work harder and achieve more. A very strong point to take note of is the fact that she says "being blind is not a disability, it’s a limitation." According to the social model, society views the disabled as being incompetent, however, Ms Khan notes the fact that being blind does not disable a person, it is just a limitation that can be worked around and compensated for if given the opportunity.

Having a disability such as being blind affects the way a person perceives themselves as opposed to others who do not have a disability. When asked what it means to her to have a disability, her response was:

"I learnt a lot by having a disability. What is most apparent to me is that my sighted friends take a lot for granted. For example if I ask them for directions with regard to street names and landmarks, they don’t know the answer, and to me they seem unconscious. But they’re only like that because they use their sight and they don’t realize it’s important to know when to turn left or what landmarks to make note of. It’s not their fault, but they just don’t realize how much they take for granted. Whereas with us, as totally blind people, we need to know exactly where we going, especially when we travel independently using public transport, we need to know exactly where we jumped off and where’s the bus stop, whereas sighted people use their sight to see where they are. My blindness doesn’t mean that much to me now that I’ve accepted it, but my challenges are to do with the government and country itself. In London for example you can shop so easily because things such as biscuits and medicine are all in Braille, whereas our government has to do a lot and change, from the banks, to the shops, to the workplace. We blind people struggle in the sighted world. I cannot read my bills because it cannot be personalized in Braille. I cant keep anything secretive, because its not in Braille, I have to get someone to help me read it. At work, I have to produce stuff that everyone can read, but no one will make the attempt to go and learn Braille so they can give me something that I want. These are the kinds of things that us blind people have to live with. You have to be reliant on people, you can’t even use and ATM independently."

Ms Khan clearly feels the need for changes to be implemented both by the government and by people in society with regard to taking people who are blind in to consideration. She feels that by being blind, she pays more attention to details that others may take for granted, which helps her be independent to the best of her ability. However, due to a lack of attention given by the government with regard to accommodating for people who are blind, she cannot maintain a personal life since she has to rely on sighted people to read her documents or personal letters. Society does not accommodate for her in that she feels like she constantly has to make the effort to accommodate sighted people whereas no one puts in the effort to accommodate for her inability to see.

For all who are blind, there is a specific point of impact where their sight loss impacted significantly and irrevocably on their life. When asked when and how she became aware that she was different, how did she explain this difference to herself, and was there anyone to help explain your disability to you, her response was:

I suppose when I was a child and I started going to boarding school and got taken away from my parents at the age of three. I think that’s when I felt trauma as a child because I was very close to my mother, since mothers tend to stick to their children, especially if you have a disabled child, so when I was taken away and looked after by house parents in a boarding school, it was traumatizing for both me and my mother, because I was told that when my sister whose also blind and I went to boarding school, my mother for a whole week wouldn’t be able to do any work, she used to sit and sob the whole day. Our parents were also poor, so they couldn’t afford to travel to see us during the school terms. But from the time I used to be taken away I could sense that I was different, I couldn’t see so I had to feel everything, you just automatically know you different also because of the way your sisters and brothers react to you. My dads sisters were teachers and his aunt was a doctor so they supported my family in terms of helping them find a boarding school and getting us in, but it wasn’t like I needed to talk to anyone about anything because there was nothing to talk about. Since I was born blind, people just knew what to do and we kind of accepted it. If someone becomes blind later in their life it will be more devastating and those people might find more of a need to speak to someone about it."

From Ms Khan’s response you can sense that her immediate family was not wealthy, so being separated from her family and not being able to see them for long periods of time was most traumatizing for her. Having being born blind, she didn’t feel the need to speak to anyone about her condition, however she could sense that she was different from others, because of the way her family treated her and since she and her blind sister were the only ones in her family to be taken away to boarding school. Her mother was also closer to her since she was disabled than to her other children, indicating that she needed more protection and needed to be treated differently because of her disability.

All people face challenges, however people who are disabled often find a certain point in their life where an incident may occur that makes them more aware of their difference. When asked about this, Ms khan’s response was that she was most aware of and troubled by the fact that she was different during her teenage years when she became attracted to members of the opposite sex. She mentioned going to dances and parties, and being made to sit alone because no one would dance with her, making her feel lonely. This brings in the theme of isolation, where people who are different feel like the odd one out (Thurston, 2010). She mentioned:

"When all my friends used to receive valentines day gifts, one day I went and bought my own and sent it to myself, because I felt like people didn’t want to become close to me because I was blind. Eventually when my sisters realized that I was feeling like an outcast, then they would ask people to dance with me. I’ve gotten over it now but in my teenage years it bothered me because I felt like people judged me because I was blind."

Thurston (2010) also picked up on this theme of out casting during his study on 17 participants who were blind. Participants claimed to be treated as if they had low intelligence and as if others held low expectations of them. These forms of prejudice are what the social model of disability identifies as the main contributing factors that disable people. Ms Khan further mentioned that "vulnerability happens to be people whether they’re sighted or not, now I’m mature enough to understand that these things happen and you learn to deal with it", suggesting that people with disabilities are no different than people who are considered ‘normal’ when it comes to feeling attraction and falling in love, however she also mentioned that "People with disabilities find it harder to find a partner", which puts the onus on society for marginalizing people with disabilities and making them feel as if they are not good enough to socialize and get involved with emotionally.

From Ms Khan’s response about how in her younger days she often felt isolated and alone, brought the next topic of prejudice to light. When asked if she ever faced any form of prejudice because of the fact that she was blind, her response was:

"Yes. Being part of the Muslim community, I have to say that the Muslim’s I find are the worst when it comes to disabilities. A lot of Muslim people are ashamed of disability, especially in the rich community. There are a lot of rich people who have disabled people in their families, and they keep them to themselves. They don’t often take their disabled members of the family to functions, they instead get someone to baby sit, saying that if they take their disabled member to the function, people tend to stare and talk behind their backs."

This brings in two themes, firstly people are ashamed to have disabled people in their families, and tend to hide them and keep them a secret to avoid people staring or saying anything hurtful. However, this leads to a second theme regarding members of society stigmatizing disabled people to such an extent that leads to people feeling ashamed and avoiding social gatherings just because of how people react. If society treated people with disabilities as if they were a part of society, not outcasts, there would be no need to be ashamed of them or keep them hidden from the community.

Ms Khan further mentioned she is often called to present on a Muslim radio channel, however when she goes there they often leave her out of conversations and tend to forget she exists. She mentioned how she once was asked to attend a presenters meeting, so when she arrived early she was asked to wait in a seating area, however when the meeting began everyone went in and forgot to escort her to the group, resulting in her missing the meeting. This kind of inconsideration towards people with disabilities are rife among all communities. We tend to not take in to account the needs and feelings of people who are different, and try our best to avoid taking responsibility for them.

Ms Khan stated that the way she deals with any form of prejudice or injustice is by being a ‘loud mouth’ and telling people exactly what she thinks without feeling scared or intimidated.

When the topic of stereotypes arose and the effect that these stereotypes have on her Ms Khan stated:

"There are a lot of stereotypes associated with people who are blind. People tend to make up their minds that because someone is blind there are certain things they can do and things that they can’t do. However, being 54, and having accomplished so much in my life and having visited so many different counties even without being able to see, it doesn’t bother me anymore. I’ve attended the World Blind Union Conference in Thailand last year, and the one in Geneva in 2008, I also received the Woman of Excellence award from the Chamber of Commerce in Durban, and I’ve received the Nelson Mandela award for Community Service, so after having accomplished so much in my life, I can now say stereotypes don’t bother me anymore, however, when I was in my twenties my answer would have been different. As you grow and mature you learn how to stand your ground. However if you’re not a strong person I think it can even send you in to depression."

The topic of depression is one to be considered with regard to people with disabilities, as negative attitudes toward people who are different, stereotypes, and prejudice are strongly related to depression and can even result in suicide.

Being blind does not make you who are, it is simply one part of a person’s identity. When asked what makes her proud about being blind, Ms Khan’s reply was:

"If you want to know the truth, I never once regretted my blindness. It makes me proud that I’m as good as my sighted counterparts, in fact better. I am equal, and I will always strive to be equal or in fact better, that’s my drive. I’ve done water sport, I’m a navigator, I’ve cycled, I look for opportunities to do things that people think I can’t. The last thing I want to do someday is bungee jumping. Success is not a destination, success is a journey. There are ten two letter words that should motivate anyone, if it is to be it is up to me, because at the end of the day you will get what you want and what you feel and what you work for."

Ms Safoora Khan, despite being blind has no limitations whatsoever. She has a stable job, she carries and presents herself well, and has a confidence about her that at times can even be intimidating. She may be blind, but she is not afraid to let her voice be heard. She set goals for herself and she has achieved more than people would have expected.

Ms Khan and I do not have much in common, more due to the fact that she is much older than I am rather than due to her blindness. She mentioned love, infatuation and attraction during her younger days, emotions that all people go through with or without a disability.

Even though she did mention how there were times in her life when she did feel isolated and alone, it was enlightening to inspiring to hear the confidence and pride in her voice as she spoke about all that she has accomplished. While she did bring up topics such as the need for changes in the government that need to take more consideration of people with disabilities, she also made mention of how people within her community are ashamed of disability, therefore enforcing the social model of disability regarding how society disables people.

Conclusion

With regard to the social model of disability, the real problem of blindness is not the loss of eyesight itself, but instead the real problem is the broad range of public misunderstandings, misconceptions, and superstitions regarding blindness held by society. The blind can be seen as discriminated against in the same way that certain racial and ethnic groups have been discriminated against in South Africa’s past. They are not regarded as valuable or constructive members of society. Even in modern times most people are still ignorant regarding disability, and continue to think of blind people as if they are helpless, incompetent, and unable to participate in the ordinary pursuits of daily life. People who are blind are not flawed or damaged, but rather they are simply ‘normal’ people who cannot see (Omvig, 2012). Given training and the opportunity, the average blind person can live and work on equal grounds alongside sighted people and produce equally good results.

^ a b International Council of Ophthalmology. "International Standards: Visual Standards — Aspects and Ranges of Vision Loss with Emphasis on Population Surveys." April 2002.

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