Focus 45th Edition

Knowing and Understanding People with Disability

By: AD. Kusumaningtyas

Rina Rosdiana, full name given from her parents almost 3 decades ago. Rina her nick name, born with normal visual function. Along with her growth, her vision gradually reduced, eventually having total blindness when she turns into teenager. There is no definite information about the cause of the case. However, her struggle to keep continuing her education never ends, although she has to move her school from general school to an outstanding school. In 2004 after graduate from a private Madrasah Aliyah or Senior High School in her hometown, Cianjur, Rina was accepted in a state university in Bandung on the course of Sekolah Luar Biasa (SLB) or Extraordinary School Education program, through the selection of new admissions. After obtaining degree of education in 2009, she then devoted herself in her previous Extraordinary School while she was in the elementary school. Two years she worked as a volunteer. Now, she has already become civil servant in West Java province and become permanet teacher in the school. 

In Jakarta, there is a deaf girl named Angkie Yudistia who is very inspiring to empower her fellows. At the age of 10 years, she was sentenced by doctor sustaining deaf which was triggered by the excessive use of antibiotics when she was sick. She had experinced depression because she was aften reprimanded by teachers. She was considered that she did not want to listen the lessons well so she often scolded by teachers and shunned by her friends. Doctor sentenced Angkie sustained deaf, but both of her parents still sent Angkie to public school, not an outstanding school. Angkie had a great  passion. She never says give up. With the disability that she have, she precisely makes her to pursue the field of communication. Her degree title gained in London School of Public Relations, Jakarta. She then continued her study at the same campus in the field of marketing communication. Angki who had ever rejected many times while applying the jobs because of her limitdness, this time she had become a CEO of Thisable Enterpresises the company which she built herself. Even her age is still very young, 25 years old. In this enterpise, Angkie collaborates with the employers to give work access for the persons with dissabilities. Besides, she is also active in the Sehjira Deaf Foundation together with the women who have dissabilities to share the experience in order to accept the disabilities and maximize all potential they have. 

Recently, an Indonesian teenager named Muhammad Zulfikar Rakhmat who has nerve disorders in his two hands, making his hands always vibrating till lead his hand get difficulties in holding something or writing. He gained the Bachelor of Arts ( BA ) after he passed with the predicate Cumlaude from Qatar University. Doctor who treating Fikar even can not mention the medical term for the nerve disorders which was sentenced. Fikar, his nick name born in Pati who graduated his Elementary school and Senior high in Al-Azhar Semarang moved to Qatar to follow his father whose work as a doctor there. 

The three of the inspiring stories above shows to the people that they who have disability is not always be obstruction to achieve the successful, even they are able to be useful for others. Although, the struggle was not easy, because the people are often underestimated to the people with disablity. It is because of the people’s misunderstanding to the people with disability, how is their potential, how to communicate and interact with them, and how to live, work, and struggling with them. Moreover, the people are still doubtful their potential and under-estimete for their ability. 

Understanding the Meaning of “ Disability “ 

At the grass root, the people still use the term of  “disabled” or “handicapped” people to call the people with disability. Most of the people use the term because it is the habit which inherited from generation to generation. The term of people with disability is often interpreted negatively so it has greatly impact the people with disability themselves especially on the substance of public policy which is often positioning the person with disability as objects and not the priority. Otherwise, the term of “handicapped” is not the same as the main priciple of the human rights and opposed with the sublime values of our nation that upholds the dignity and the prestige of human. Therefore, the term of disability changed  by new term which has philosophical values more constructive and more suitable with the principle of the human rights. 

The term of disability has broader term and comprise inclusive values that appropriate with the soul and spirit of the law reformation in Indonesia. It is also comformable with the substances of Convention on the Rights of Persons with Disabilities ( CRPD ) it is now has been ratified by the government. The using of the term “ People with Disability “ agreed by the participants who attend the forum of the Materials Preparation of international convention about the rights of the persons with disabilities which held in Bandung March – April 2010. On the forum of people with disability which carried out supported by the Social Ministry, in addition to recomend the government to ratified immediately the convention of CRPD in the shortest time, also using the term “ Disabled People“ to translate the phrase “Persons with Disabilitie “. The comparison of the word disabled is ‘difable‘ which come from the abbreviation ‘ different ability ‘ or persons with special needs. 

Meaning of the persons with disabilities as proposed in the explanation of the Act No. year 2011 about ratification of the Convention on the Rights of Persons with Disabilities ( CRPD ) that is the person who has physical limitations, mentality, intellectual, or sensory in the long term in the interaction with the society and the people attitude can meet difficult barriers to contribute fully and effective based on the equal rights. Therefore, the confession that the discrimination based on the disability a violation to the dignity and the value which adhered to everyone. 

The meaning of disability is quite diverse. However, the Disabled World a site of information for persons with a disability, categorized 8 types of disabilities: 1). Physical motion and Obstacle, 2) Spinal Disability., 3). Disability Head of Brain Injury, 4). Vision Disability ,5) Hearing Disability , 6). Cognitive or Learning Disability, 7). Psychological Disorders, 8). Invisible disability. Meanwhile, Maulani A. Rotinsulu, Chairman of the Women Disability Community of Indonesia (HWDI) spoke of the limitations of persons with disability into several things, including a). Phisycal is the people who suffered physical impairment in the footwork and lack of wholeness limbs, b). Intellectuals is people who experience limitations in remembering or concentrating, c). Mentally is the one who sustains limitations in the control of behavior and emotions, and d.) Sensory is misbehaving on the functions of the senses such as vision, hearing, taste, and others

In Act No. 4 of 1997 still call people with disabilities with the term disabled people. Mentioned disabled there is any person who has physical abnormalities and/or mental, which may interfere with or constitute obstacles and barriers for her to perform it as, which consists of a). Physical Disabilities; b). Mental Disabilities; c) Physical and Mental Disabilities.

The situation of persons with Disability in Indonesia

Persons with disability in Social Ministry concept belongs to one of the categories they are having social problems, in this case the conventional social problems. The conventional social problems still dominates, especially poverty and neglecting, disability, alienation and social disability, failed, and distortion behavior, as well as due to the disaster. Social Ministry categorizes 22 kinds of Disabilities social welfare Problem ( PMKS ), where persons with disabilities ( disability ) is one of them. The disabled here is defined, any person who has a physical or mental disorder that may interfere with or constitute obstacles and barriers for him to perform the functions of the physical, social and spiritual are viable, which consists of a physical disability, mental disability and physical disability and mental disability. Based on the recapitulation number of PMKS 2008 per type, number of persons with disability is 1.544.184 inhabitants.

In 2009, the Central Office of Statistics ( BPS ), published the statistics of disability in the SUSENAS 2009. A list of questions in the SUSENAS 2009 using the categorization of disability as in Act No. 4 of 1997. Statistics which presented in the form of stating “ Yes “in the countryside ( 1.198.185 inhabitants ), in urban areas ( 928.600 inhabitants ), as well as total ( 2.126.785 ) inhabitants.

A table of the number of disabled%. by type of disability

Types of disability amount ( % )

Eye/Blind 15.93

Impaired/Deaf 10.52

Talk/Mute 7.12

Mute/Deaf 3.46

The body  33.75

Mental/Grahita 13.68

Physical and mental/Both 7.03

Soul 8.52

Total 100.0

Source : BPS, Susenas 2009

Meanwhile, from the results of population census in 2010, where Indonesia’s population amounted to 237.641.326 persons mentioned that there is a population of 2,71% Indonesia 10 years of age and over have trouble functional (with a low difficulty levels to severe).

Types of Difficulty  no difficulty having less difficulty,     severe difficulty Population Aged 10 years and over% of the population who experienced Difficulty

See 185.019 5.313 507  

190.839 3.05

Hear 187.815 2.568 456  

190.839 1,58

Walking or climbing stairs 187.751 2.432 656  

190.839 1.62

Remember or concentrate 188. 097 2.126   616

190.839 1,44

Take care of self 1.511 533 188.798 

190.839 1, 07

Source: Population Census Results 2010, BPS RI

From the above data we find that people who have trouble seeing the largest percentage of the population with among other difficulties, which amounted to 3.05%. While the next difficulty is difficulty walking or climbing stairs of 1.62% 1,58%, and hear. Difficulty remembering or concentrating of 1,44% as well as take care of self of 1.07%.

Regardless of how the actual number of persons with disability, which should not be forgotten is that they need to get serious attention from the Government. And the attention that is a policy that is really able to answer the needs of persons with disability. It’s not just a policy rules on paper, but also the guarantee of accessibility in the provision of facilities for persons with disability and suitable accommodation (reasonable accommodation) and the type of its limitations. As has been done during the administration of President Abdurrahman Wahid that provide facilities and special parking ticket queue at the Gambir railway station, as well as special toilets at the airport. This shows that the direct participation of people with disability in decision making especially in the setting of public space is important, because they feel it of the experience as the basis for decision making. Unfortunately, when Wahid stepped down and was no longer a strong concern for the persons with disability,  the policy terms of accessibility is also declining.

In everyday life, persons with disability face greater difficulties than society in General, because they have barriers in accessing public services. Persons with disability often don’t have access to a decent education, health services and economic activities. The lack of access in transportation, buildings, education and jobs is hampered in the example the daily life of people with disability. A variety of situations that arise because there are still many discriminatory government policy against disability. One of the policy of the Act that is distinctively discriminatory against persons with disability is physical and spiritual health conditions for presidential candidates, members of the legislature, College, school, and others. Even airline regulations also requires that the passenger’s disability to sign a statement that they are sick, and the airline is not responsible of what happened to them because their “illness“.

In the context of practice law, persons with disability is considered to be more vulnerable because of its elevated position by text and the system and law enforcement apparatus. Persons with disability are often faced with the double sacrifice (double victimization), on the one hand has been a victim of crime and on the other hand became a victim of negative stigma and access closure to justice due to a narrow interpretation of the definition and from law enforcement officers .

There are a few examples of problems in the illustration below. Rules created by the ministry of education and national culture  of participation in SNMPTN at maintained that a prospective participant SNMPTN at 2014 presupposed not blind, not deaf, not talk, not disabled, not color blind, not color blindness whole and in part, is a very clear violation of human rights. Meanwhile, ahead of the election of the Legislative members (Pileg) 2014, the issue which had flourished and was revealed to the public is not the availability of the ballot form in the form of Braille for the blind, except voters to the ballot form to select a DPD. election commission is working to help people with a disability by providing escort force at polling stations, to modify the table that are higher in the sound booth for disabled and lower table for the wheelchair users, but it also does not guarantee accessibility all of them to use his political rights. Moreover, in the ”Direct, General and Free” and “ Honest and Fair ” because they are made to depend on the other party.

Problem of Women With Disability

Obtaining the complete data about disability based on the gender is not easy. However, we still be able to see that the issue of women with disability becomes important to concern because they experience multiple discrimination, that is as women, persons with disability, and most of them live in poverty. Stigma and discrimination of women with disability have double discrimination because women related to the condition and position in the society. Experience and a different impact occured by women and men with disabilities affected by the social and cultural structure of the society. An unfair division of work and the gap between women and men in different fields, has led to an access and control, the benefit and opportunity that is obtained by the women with disability are not equal to the person with disability in General.

Within the family, the women with disabilities often gets less attention and assistance from the family members, or less priority to access to independence. For example, the women with   disabilities feel unconfident to go out of home, or think that they may not have spouse/husband that “normal“ or non persons with disability. They are afraid if they are not able to serve her husband. Therefore there is a presumption that it is grateful if you can find husband with disability as well. In the family which have children with disability, the mother plays an important role in caring for and bear the brunt of his son, as the roles expected by the community towards women.

Some of the exposure above at least reflect how is the life of women with disabilities is extremely complex. These issues also rise to various acts of violence against women with disabilities. The discussion that followed by around thirty society disability organization representatives in Yogyakarta supported by SIGAB (Sasana Integrasi dan Advokasi Diffable), in the commemoration 16 days Anti violence against women in 2013 has been mapped out some mode of violence against women with a disability. Among them,there  is a raping experienced by women with disability lead to pregnancy without liability, women with  disability who divorced because of having no descendants, unwilling to serve the husband, considered unable taking care of family, as well as those who become the second wife by her husband. These problem were triggered by a charge of marital law in 1974 article ( 4 ) a very discriminatory and not in women’s side. As it reads “ husband is allowed to  marry more than one wife if from one wife cannot perform its obligations as a wife, the wife had the impairment or disease that cannot be cured and the wife cannot bear.” The opposite can also be the reason for the wife to sue for divorce to her husband. Although the gender perspective impressed just because of these reasons apply for both genders, but the formula is still not friendly on persons with disability who also have the right to establish a family. Therefore, this regulation is still needed to be perfected.

While in the terms of sexual violence experienced by women with disability, it is inseparable from the notion that they are the object of violence. When sexual assault occured, it turns out the help as well as the legal system in Indonesia no one can advocate for. Not surprisingly, just a little problem is handled. The majority of cases of violence against women with disability thus was never revealed. It is because the women with disability gain less access to information about reproductive health and lack of sexuality. The weakness of communication technique which is mastered of health workers is also a significant constraint in an effort of making socialization and services especially to the deaf disability and mentally disablity. In addition there is still a stigma in the community who sees the issues of sexuality and reproductive health as a taboo thing. It is also strongly associated with the presence of a myth regarding the issues of sexuality in the persons with disability.

The first opinion says that people with disability are not interested in sex or not able to perform sexual activities. While the second opinion is the contrary, that the person with a disability have an intuition of excessive sex, and often unable to control their sexual behavior so that they need accurate information and free from perceptions of stereotype, so that any persons with disability can develop a healthy view of themselves as a sexual beeing. According to Masfufah, a teacher an Extraordinary School in Banyuwangi, she found one of his student swiping his genital to the wall or to the floor when his sexual desire. In another occasion, one of her mentally disorder students told her that ( sorry ) her breasts held by one of her friends without knowing that it is the acts of harassment sexual. Therefore, in providing knowledge and information about reproductive health needs to be noticed the type of disability they experienced and the appropriate tools to describe the information about it to them.

How is Islamic Perspective Considering the Disability Issues 

The Spirit of Islam teaching that stand in the disability side should make us more extrovert to this reality. Allah has created human beings (children of Adam) as His glorious creations. As mentioned in his word: “We have honoured the sons of Adam; provided them with transport on land and sea; given them for sustenance things good and pure; and conferred on them special favours, above a great part of Our creation.  .” (Quran, Chapter Al Israa, verse: 70)

Allah swt. does not make an appearance and physical condition as a measure for assessing the piety of His creations. As mentioned in the Hadith of the Prophet Muhammad. “ Verily, Allah will not look at the face and your body shape, but Allah sees qalbu ( intellect and heart) and your deeds.  (Narrated by Muslim, Ahmad and Ibn Maajah from Abu Hurayrah ). The Prophet saw. himself ever get a reprimand by Allah Almighty through his angels when he ignored a blind person as recorded in the act of the descent of the Surah Abasa verses 1-2:

“He (Muhammad) frowned and turned away, because there came to him the blind man ( interrupting ).” ( Quran Chapter Abasa 1-2).

According to the story, once upon a time while the Prophet saw. accepted and talked to the leaders of Quraysh tribe that he expected to convince Islam as their religion. In the meantime  came Ibn Ummi Maktum, a blind comrade who hopes that the Prophet saw. read him verses of Al Quran which has been revealed by Allah. But the Prophet saw.frowned and turned away from Ibn Ummi Kulthum who is blind, then Allah sent down this verses as  comment on the attitude of the Prophet against the Ibn Ummi Maktum.

Besides prohibition to act discrimination, verily, Islam has also provided examples to satisfy the rights of the persons with disability accessibility. According to Nyai Hj. Shinta Nuriyah Wahid, the descent of Quran Chapter. Al-Mujadilah to “ to make room in the assemblies,” the occasion of the origin associated to the response for the persistent efforts of the Prophet’s companions, Ibn Mas’ud who diligently went to lecture the Prophet but often have to sit in the back because of be late. Physical limitations on his feet often allow him to run quickly, so he often late to come in the Assembly of the Apostles when he desperately wanted to study. Therefore, Allah Almighty keep encouraging people to face the life by doing good and virtuous charity and worship to Him. Every muslim, imposed an obligation to remember Allah, in any conditions regardless he is in good health or sick. He saddled the obligation in accordance with the levels of his ability and continuing to take the wisdom of any events that occur around him. In The Quran Chapter  Ali Imran, verse 191 God says who that is, “ Men who celebrate the praises of Allah, standing, sitting, and lying down on their sides, and contemplate the ( wonders of ) creation in the heavens and the earth, ( with the thought ): “ Our Lord ! not for naught hast Thou created  ( all ) this !mGlory to Thee! Give us salvation from the Penalty of the Fire “. As someone who was sick and not required ablution when going to pray, for those who are experiencing physical limitations or disruptions remain obliged to practice, do not always stand up, but also when he could only lay down. In the context of social life, they are also entitled to optimize the potential of community life themselves in a nation, a country, even for humanity in any parts of the world.

Therefore, no wonder when we watch the television which is broadcasting news of the Hajj, we are going to get their impressions acts of Thawaf from Shafa to Marwam, there some who is on going by sitting on a wheelchair. The blind person is now feel easy to read the Quran because the Holy Quran can be accessibled by Braille.

The development of Fiqh Disability is sluggish when compared to the development in other issues. However, there is one example of progressive ijtihad is the dictum of Shaykh Tantawi ( deceased ) who was in his last life become the great Sheikh of Al Azhar, Cairo, in 2000 that requires officers to sign language beside the khatib ( Speaker ) to translate “preaching to the deaf people. Fatwa Tantawi cancel a fatwa forbidden at the previous time to use interpreter because it would interfere with hearing of Jemaah concetration. In the end, successfully implemented and Tantawi fatwa worshipers deaf so touched because for the first time in their lives they can check the contents of the sermon.

Various Endeavors to Empower and Fulfill the Rights of Disability 

Efforts of the State to respect and fulfill the rights of persons with disability truly from quite a long time ago. Also has quite a lot of legislation rules attempting to do something against the disable people. A variety of efforts to fight for the accessibility of public spaces for people with disability, has also been a lot done during the reign of Gus Dur,. Mrs. Shinta Nuriyah also provide wheelchair assistance for those who have a physical disability.

However, that need to be re-examined in establishing policies for persons with disability is often constrained by the viewpoints of society against this group. So far, the community’s point of view against this group still tend to charitable or consider them as a group that needs to be helped. Though, the most important is how to make people with disability optimally empower and strengthen themselves. The way is to give them rights, and having regard to their accessibility to the fulfillment of the rights.

There are various organizations of persons with disability and always fight for their rights. There are a variety organizations based on the membership such as the unity of Indonesian Disability (PPCI), Indonesia Community of the Women Disability (HWPCI) Indonesia which is now named the Women Disability Association of Indonesia (HWDI), the Association of Blind Disability Indonesia (Pertuni), the Federation of Disabled Welfare body of Indonesia (FKPCTI), and the Deaf Indonesia Movement (Gerkatin) are always help ewach other fighting for their interests, which ultimately made the Convention on the Rights of People with Disabilities (CRPD) was ratified by the Government. There are also new form of organizations such as Thisable Enterprise seeks to connect people with disability with access to the world of work or Mitra Netra Foundation which providing and developing services for the blind persons, including information technology services for the blind people which is through speaking-computer.

Related to the Ratification has been associated with the Convention on the rights of persons with Disability, persons with disability are currently fighting for the changing of the legislation on disability immediately replaced with new laws, namely the law on persons with Disability. Of course, the replacement of this law is not only to change the name, but it is also associated with viewpoints that had been looked as the question of disability as “ social welfare “, into the Affairs of the “ human rights “. Therefore, at this time there has been a coalition of persons with Disability who filed the draft of the Law at the house of representatives. The last news, after met the house of representatives for several times with persons with Disability the draft law finally agreed in Prolegnas house of representatives this period and has been in the section of Legislation ( Baleg ). Expected, in the remaining time available ahead of the expiration of their duty in 2014, the law draft can be expeditiously addressed through Special Committee and soon passed.

Another effort is developing a pattern of education for persons with disability, whivh previously through the provision of special school as Extraordinary Schools (SLB) through the development of the concept of inclusive education. The inclusive education is education which is based on a passion to embrace all group of education. Education Inclusion is an insightful educational multicultural Implementation that can help learners understand, accept, and appreciate other people of different ethnicity, culture, values, personality, and physical or psychological functional. Through the inclusion education of disability,persons with disability also have an access to the same education with other learners who do not experience disability.

In Jepara, Laila Jauharoh, Principal of SEMAI Elementary School  implement the inclusive educational values in her school. According to her, the school that uses this inclusion education principles must respect the diversity of the background of learners. Regular students and students with disability are mixed in a single class, so that they can interact each other and grow their empathy to other students with disabilities or special needs. Although it has not been able to serve the students of blind and mute, however the school has received a deaf student in communicating supplemented with hearing aids as well as receive some students of mentally disabled ( having mental retardation ) or autistic students. There are indeed challenges in applying these inclusion education system, since most parents demanded that their son probably overachievers and contended that the school accepts students with disability can make students regular (non disability) will be missed lessons due to having to adjust their attitude. For the children, actually there are no serious barriers. Thus in interacting with other students who have disability, even though initially they were a bit surprised to see a different reality with him, but in the later stages it will grow of empathy. This will bring up the positive spectrum of interaction for both; where they could receive, empathize with others, and collaborate each other.

Therefore, in implementing these inclusion education Maulani Rotinsulu argued for not to be forced. The steps are, preparing the students of disability to interact with students who are non-disability. For example, preparing a special class at certain mix school. Or open spaces for classes during training is owned by various parlors, can also be followed by other participants non disability. This interaction will create a society able to understand the needs of persons with disability. To the contrary, making the student with disability can adapt if later stand in community life when people are actually very diverse.

There is a unique example of this perspective inclusion educational that occur in the State Islamic University of Sunan Kalijaga Yogyakarta when conducted by Rector Prof. Dr. Amin Abdullah a few years ago. Prof. Amin, is “ inclusive fighter ”, the ideology that teaches us to respect and accommodate differences. One of its policies is to give scholarships or funding of education at the University to students who have disability. The basis of his thinking, as students, persons with disability needs larger funds in daily living, including for the study. Including, to access the references independently, blind students must have technological supporting tools . 

Specifically, there are also attempts to introduce reproductive health education in adolescents with disability taught by MAJU ( Deaf Adolescent Reproductive Health Media) and Langkah Pastiku! for teens who are blind. MAJU and Langkah Pastiku motivated by the view of deaf and blind adolescents have equal rights with other teenagers to get access of information and reproductive health services. As for learning media developed including the print and braille modules, training modules for teachers and master trainer, doll of reproductive health, napkin reproductive health, sign language dictionary of reproductive health in the print shape and CD.

The various endeavors should be appreciated and developed so that people with disability can really get the fulfillment of their basic human rights. In addition, the country also had homework to embody the friendly city for persons with disability by providing decent accommodation and accessibility ( reasonable accommodation ) for them. So, what has been implemented by Australia as in Melbourne as well as in the neighbor country of Malaysia, a fellow ASEAN member that we are worth to follow. Isn’t it our duty to the Regent of Allah is to propagate His mercy on anyone? {} AD. Kusumaningtyas       

                   

 

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