What you can't see
Issue 3 Jan / Feb 2004
The word disability conjures up many images for us all, but how many of us look past the stigma and try to understand what the word actually means. The reality is that physical disability is not the only definition.
There are a plethora of disabilities ranging from depression, mental illness, dyslexia, chronic back pain, deafness, to the more visible types. For Homaira Khan disability is not just about what you see, it is also about what you cannot see. What constitutes a disability? According to the 1995 Disability Discrimination Act ‘a person has a disability if he has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities.
The easiest form of disability to notice is physical. Sometimes we pity them, or simply want to help another person in need. Other times we are embarrassed by our own ignorance and look the other way.
Yet people with a disability do not need or wish to be perceived as victims. Many disabled people speak of feeling disempowered by the historical image of disability as something that renders people incapable or even dumb and at times point the finger at society for impinging upon their independence.
What practical difficulties do the disabled face? To define their needs, a disabled individual is assessed by relevant health authorities and then receives help from social services. Families of the disabled as well as disabled people themselves require information on their disability and what changes need to be made to their day to day living. Those needs can be to do with the psychological results of a long term illness such as counseling for those depressed at their situation, or simply advice on how to deal with disability.
Mental illness and depression account for a large percentage of disability in this country. Those with mental illnesses and/or physical disability may need help in daily activities, personal care and special equipment in order for them to lead an independent life. Within the last ten years there has been some improvement in public transport, easy access doors and public spaces which have improved the lifestyle of physically disabled people. However, there is a great deal of work to be done.
Services have also to differentiate between the needs of the old and the young, and to take into account the gender, and in some cases, the religious needs of the individual. For many, sustained and long term assistance from government, voluntary and religious organizations is a life line to those who have no one else to turn to for advice.
Children can benefit greatly from a dedicated schooling designed to accommodate their unique needs. Nazli Hussain finds out why Muslim parents in Slough are sending their children to a very special place.
Slough’s Arbour Vale School is such a place. Smiles, noise, and bright colours surround the pupils, 30% of whom are Muslims. With 250 pupils on its roll, the Stoke Road school focuses on special education needs and is also a specialist sports college. Pupils range from two year olds in its nursery right up to young adults aged 19. Head teacher Alison Beane explains, “We provide an inclusive education for children whatever their race, culture or dis-ability. We have a range of needs here and entitlement is all-important.
We don’t want our kids to miss out on anything. The child comes first and then we look at the disability, so the child can achieve as much as he or she can. We focus on the individual child and individual timetables. Another of our main aims is to involve parents and the local community in the life of the school.”
“The easiest form of disability to notice is physical. Sometimes we pity them, or simply want to help another person in need. Other times we are embarrassed by our own ignorance and look the other way. Yet people with a disability do not need or wish to be perceived as victims”
Parvinder Khanna is the school’s Parent Partnership Coordinator. Families with special needs children have many concerns, she agrees that, “Our work involves making families understand that the education of their child is important; they must think about their future. In the past some parents were reluctant for their children to even be at school. Now there has been a total change in attitudes. Parents contacts us themselves with their concerns. We’re working together to groom our kids to be full citizens of our community”.
Communication between families of pupils and the school has vastly improved in recent years with a strong emphasis on interaction. All parents must attend parents’ evening’s meetings and are encouraged to share in their children’s achievements.
“At our last school performance, we had a 400-strong audience,” recalls Alison. “Before, the hall would be half empty. I feel parents are not so concerned now about their child being seen attending a special needs school. Muslim families in particular show such absolute love and care for their children. If the option of residential care arises they prefer their child to be cared for at home.”
Twice a week the school plays host to ‘Parvaiz’, a group for young disabled Asians. Sports and the computer classes are the most popular pastimes. Parvinder believes parents are getting the message- to be involved in achieving their child’s potential. He eventually wants to extend awareness of disability issues beyond the school walls. “We would like more people from the wider community to come to our open mornings. Visitors are often pleasantly surprised, and say the kids and the school are not what they had expected.”
The school encourages pupils to tap into their cultural backgrounds. Art was the focus of an Islamic Awareness event where children of all faiths as well as teachers, parents and the mayor took part in an evening aiming to highlight Islamic heritage. Activities included an arts workshop where children learned about mosaics and Arabic writing. “It was wonderful to see Muslim children taking their teachers over to the exhibits and explaining their significance. They were so proud,” remembers Alison, the head teacher. Hajra Naseer, aged five has been diagnosed with developed delay
According to teacher Kalsoom Azad, who is also the R.E coordinator, “Everyone thoroughly enjoyed themselves. After looking at a prayer poster, one of the non-Muslim children had a go at enacting the different parts of prayer.”
Haajra Naseer, aged five, has a condition called developed delay. Her parents Mohammad and Asma endured an uphill struggle to ensure she was properly diagnosed. Mohammad recalls, “Haajra spent the first week of her life in special care as she was low weight. It was there she started having fits. At about eight months, she had fits again. She had been sitting up and was weaning, but after the fits everything stopped. We took her to the GP but were told not to worry, it was only a cold. But we were worried and wanted answers. Haajra was put on steroids, but that just made her put weight on.
We went to Oxford’s John Radcliffe Hospital and the medication she was given began to help. Her fits stopped and she smiled for the first time aged 15 months. She had lost her hearing and her sight and she was all floppy. Her treatment included sensory work and physiotherapy. She walked at age two and a half”.
Asma feels Haajra’s progress has been helped by the arrival of their second child. “Haajra started trying to take steps after she watched her younger brother Abdullah walking. Our son definitely motivated Haajra. We feel parents with a special needs child should not worry about having more children.”
Inter-family marriage often came up when the couple discussed Haajra’s condition with doctors. Mohammad found this frustrating. “The first question they’ll ask is, ‘Are you related to your wife?’ Asma and I are not from the same family”.
Haajra is walking properly now and can see. She is learning to make sounds and words, and it is hoped she will be able to talk in the future. “She said ‘Daddy’ a couple of weeks ago,” Mohammad proudly tells me.
Amra has two sons, the youngest of whom Sulman, 12, has intellectual delay. “It was disturbing and bewildering at first with Sulman, as we compared him with his older brother who was very alert at the same age. We first began to be concerned when he was unable to sit and walk. Now he is physically ok and able to take care of himself. His speech is not so clear, and he has the IQ of a seven or eight year old. People in our community should learn about special needs and disability. They should take it as a challenge rather than remain ignorant or make hurtful comments like ‘it is because of your sins’.”
Robina Sarfraz is the mother of four sons. Fifteen year old Mohsin, who is her eldest, has epilepsy and is a wheelchair user. “From birth Mohsin was not developing at the rate of other children. He is unable to walk or talk, and as a child was totally dependent on me. I have a lot of support from my family, and my husband looks after the kids for one full day a week so that I can have a break. I would like my son to be welcomed into the local mosque and to be able to learn about Islam in a practically way at his own pace.
Our children should be seen and acknowledged. A first step is to provide disabled access to building”. Disability within the Muslim community is frequently ignored and not discussed or dealt with. Some even see it as a punishment from God, or an evil. Mental illness especially has been targeted by many unscrupulous religious figures that always see it as ‘possession by jinn’. Other Muslims have simply ignored mental illness in the family, instead of addressing the issue and see it as a shameful stain on the reputation of the family.
There are many references in the sayings of the Prophet Muhammad to health and how Muslims how deal with it. Contrary to the attitudes of some Muslims, disability is not a punishment, but another way by which to turn to God. According to Jalal-ad-Din Abdur Rahman As-Suyuti who wrote The Medicine of the Prophet,
“Truly, sickness is one of the strongest incentives to make a believer turn to Allah in repentance, and speak truthfully, and make amends for his wrong actions. A personal should indeed ask for good health, but if Allah gives him sickness, then it should be received with patience, and with acceptance and with gratitude”.
Muslims need to support one another, and although there are some local organizations such as the Deaf Muslim Group that exist to assist disabled Muslims in the community, these are few and insufficient. In order for there to be more help, people need to be made aware of disability, and have a more open discussion about issues. In the meantime, more patience, understanding and tolerance would go a long way.
For more information visit the following websites:
The UK’s leading disability site, giving essential information, news, features, advice, adverts, links archive and chat forum.
SKILL is the national bureau for students with disabilities.
DISS provides a comprehensive national database of disability information.
The disability committee
The official government site with useful information on disability rights and entitlements.