by Sabina Iqbal with Lisa Cristofolini
In society minority groups face structural disadvantages. Forming and occupying space and taking up avenues within individual agencies can become central to breaking down the barriers faced. The right to information is a basic human right, essential for individuals and groups to exercise and make informed decisions as independent persons. Deaf and disabled people in the UK, as elsewhere, continue to face discrimi-nation, including a lack of access to information, on various levels - political, social, economic and religious. As a Deaf Muslim woman I have experienced particular challenges within the community, in the education system, in the field of work and in the social and health systems. Through a number of empowering schemes and strategies, I have determined certain life paths. As a result I am now a Chair/Founder of the pioneering Charity Deaf Parenting UK which is run by Deaf parents for Deaf parents. In addition I am a full time Social Work Manager, Author, Wife and Mother. Throughout the course of my life, I have challenged stereotypes and worked to overcome difficulties. I have a positive approach, in order to achieve my life’s aspirations and goals. This has not always been easy. This article, both on a personal and professional level, is about my journey to empowerment, and will serve to explore and illustrate what empowerment can mean more generally for Asian Deaf Muslim women in the UK and elsewhere.
Minority within a minority
According to the charity Action on Hearing Loss there are more than 10 million deaf and hard of hearing people in the UK. Of the total, 3.7 million are working age (16-64) and 6.3 million are retirement age (65+) (2011). Deaf people are protected by the Equality Act 2010 which bans all unfair treatment by helping those who are deaf achieve equal opportunities in the workplace and in wider society. A survey carried out by Hertfordshire Hearing Advisory Service (2011) showed that among the deaf community, those most disadvantaged in receiving the necessary support are those from ethnic minorities. I am profoundly Deaf, Asian and Muslim, which makes me part of a minority within a minority living in the UK. Statistics show that there is a higher rate of disability and deafness within Asian communities.
In various Asian communities, as is the case in wider society, the predominant perception is that it is culturally taboo for a child to be born with a disability, in this case because it can be viewed as a sin and/or punishment from God. Because of these cultural influences, my parents initially struggled to come to terms with my diagnosis. My Grandfather, before he passed away (blessed be upon him), often said that he prayed for me regularly to be cured of my deafness and I always thought to myself ‘why does he worry about me so much, I am doing just fine?’ Deaf women in particular can be viewed as less capable of leading normal lives. I remember, while working as a Social Worker, between 1996 and 1998, in the inner city, in East London, that within the first few minutes of visiting an Asian family with deaf children or young people, I was often met with instant reactions of surprise. Families were astounded to see an Asian Deaf woman working as a Social Worker. Common questions asked, included 'Can you drive? Can you work? Can you attend University?’ I informed them, yes, Deaf people are able to do anything they wish; the only thing they cannot do is hear.
I note here that ‘Deaf’ with a capital ‘D’, means identifying culturally as Deaf and being actively part of the Deaf community, where sign language flourishes. Instead, ‘deaf’ with a small ‘d’ signifies people with various degrees of hearing loss including deaf, hard of hearing and deaf-blind people. Deaf people are often referred to as ‘deaf and dumb’ or ‘hearing impaired’, both of which are offensive terms. The most appropriate words adopted by National D/deaf organisations are 'Deaf and hard of hearing'. Drawing from personal experience, a deaf person on meeting a hearing person for the first time, often receives ‘an apology’ people say ‘I’m sorry’ when finding out we are deaf. We do not expect sympathy. We are empowered through the use of British Sign Language (BSL), which is a language in its own right and used by over 60,000 people in the UK.
Lack of Deaf awareness in families can be detrimental to a young person’s future. It is essential for a deaf child or young person to be taught that deafness is not a hindrance. The necessary support and encouragement is vital for them to fulfil their life plans. The unwavering love and support my family gave to me, my parents especially, are central to my successes. My mother became fluent in BSL and progressed to working in Social Services with D/deaf and hard of hearing people, dedicating the last 20 years of her life to this service. The presence of negative attitudes in social structures disable, rather than the fact of being a D/deaf person. While growing up, limited positive initiatives existed for Asian Deaf communities. Now, there are Asian Deaf Role Model Services in existence, the National Deaf Children's Society, Deaf Muslim UK and Al Isharah. All of these support and engage with Deaf people in a number of ways.
The Education System – challenges and opportunities
A D/deaf person’s experience of education will vary upon whether they find themselves in a Deaf or hearing environment and whether or not they have access to the appropri-ate support and opportunities. I was fortunate enough to have attended a Deaf nursery, a Deaf primary school and a well sought-after Deaf secondary school, Mary Hare Grammar School. Mary Hare Grammar School was residential, with two hundred deaf students. It was predominantly white, so I was the only Asian student in my year and one of two in the whole school. I became subject to racist comments, which affected me deeply. As a result, racism awareness initiatives were delivered to all years and Islam and Muslim culture was taught in Religious Education classes. This reined in the racism and helped students and those I made friends with understand my identity and learn to accept me for who I was. I eventually felt fully integrated and made lifelong friends at the school. It was largely a positive experience and I took away with me many happy memories.
The transition from Deaf school to hearing college presented new challenges. I was the only Deaf student among nine hundred hearing students. It was virtually impossible to get along because no one used BSL and everyone stuck to their close circle of friends. Through lip reading I managed to make a few friends but our interactions were limited. I did not have access to good support services and I only received communication support in class. I succeeded in passing my 3 A-levels but found myself mentally and physically exhausted by the end.
This is the experience of many Deaf students who have attended mainstream school, college or university. They are often disadvantaged by the lack of deaf awareness and appropriate communication support to meet their needs. Some Deaf students I knew proceeded on to Deaf colleges and universities in Bristol, Wolverhampton, Derby and Preston where there were better facilities for Deaf students, including communication support and interpreter training programmes for hearing students who were considering careers as BSL interpreters. Where these exist the hubs present fantastic opportunities for Deaf people to be empowered both emotionally and educationally by allowing full participation without barriers.
It is essential for every D/deaf student to receive the appropriate information about their local school, college or university. Having an expert or Deaf role model, advising them on issues to consider and how their needs can be best met, allows for a more enriching experience in education. Recalling my time at college, then, I was in for more of a shock because I had limited advice. I found myself fighting for my right to get better communication support, a basic need which hearing students need not worry about. Today, I often share the benefit of my experiences with many young D/deaf students and make sure they explore all options in whatever they decide to pursue in their life.
Empowerment in Employment
Given the structural discrimination present in many employment areas, entering the world of work can be a daunting experience for D/deaf people. It is a time often characterised by an absence of the support needed to harbour the necessary confi-dence to enable facing these challenges. I was fortunate to have met some important people in my life journey who helped me build my confidence over time. Those individuals empowered me at my time of need. While looking for work, they encour-aged me to take on voluntary and unpaid work at a time when nothing was available in mainstream employment. I was determined to find a job but was faced with endless excuses such as, ‘you are deaf’ or ‘you cannot use a phone’. At this time, the Disability Discrimination Act had not yet been enforced, so it was extremely common for D/deaf people seeking work to face point-blank discrimination.
My working life started at the tender age of 15. I was a member of an interview panel appointing BSL Community Interpreters. Here I learned how the recruitment and interviewing process worked. After college, I worked in an office and from there went on to pursue my dream of working in a travel agency business. Despite successfully passing the required travel courses, I was told this field of work was not appropriate for me because I would not be able to manage phone calls. My life took an interesting turn when I entered the world of Social Work in 1996.
I started off as a Project Researcher, working with Asian D/deaf people and their families. Here I became aware of the gaps in services for D/deaf parents. Having met three D/deaf pregnant women living in the UK who did not know BSL and who were only able to communicate using the sign languages from their own countries of origin, I saw just how much they struggled to access maternity services and learn about pregnancy. Their experiences inspired me to do something about this. In 2000, I became a qualified Social Worker, in 2001 I received a BA Honours in International Social Work and that same year I set up Deaf Parenting UK.
Throughout my career I have had communication support from Access to Work (ATW), a government scheme providing practical advice and support to persons with disability to overcome work-related obstacles. ATW was a great support, helping me achieve all that I have achieved today. I am now a Team Manager for a local County Council, managing twenty three members of staff. Without ATW support I would have probably remained in a low paid job with limited human contact and interaction. Today there are still D/deaf people not aware of ATW so they find themselves struggling with employers’ lack of deaf awareness.
Access to Social Services and parenting support
90% of deaf children are born to hearing parents. When these children want to start their own families they are faced with sometimes non-existent, very limited or patchy support by local authority Social Services. This is in comparison to hearing parents who are immediately able to access the support that is available. Deaf people have limited access to mainstream information such as parenting skills classes and even with appointments with midwives or health visitors can pose some difficulties. This puts Deaf parents at a major disadvantage, missing out on vital information. As regards to their children’s education, many Deaf parents struggle to adequately participate in their children’s school life due to a lack of Deaf Awareness and the inability of staff to communicate in BSL. Furthermore, many Deaf people are unaware of their rights and so if Social Services become involved, they are less able to self-advocate, thereby facing the risk of having their child removed or put into care or having their child’s name put on the child protection register.
Due to communication barriers, D/deaf parents commonly face isolation. They are therefore more likely to experience mental health problems and are placed at a higher risk of post natal-depression. The government paper Every Parent Matters (Department for Education and Skills 2007) stresses throughout the importance of parents being informed of services, clearly stipulating that in order for parents to take advantage of services designed to help them, they need to know what is available to them. If they are not aware they could be missing out.
Following the lack of interest from mainstream organisations to develop a range of projects and programmes for Deaf parents, a decision was made in October 2004 for Deaf Parenting UK to become a registered charity. As an independent organisation, we seek funding in order to provide the support and information Deaf parents deserve. We help empower Deaf people in a number of areas in and around parenting.
Deaf Parenting UK and Partnerships
Partnerships for D/deaf people can be extremely empowering, depending on the level of communication and understanding there is within them. In my line of work I have met D/deaf women facing problems with their hearing partners due to their partner’s and partner’s family’s lack of deaf awareness. Some families have pre-assumptions that deaf marriages are not legitimate and will result in deaf children. This is untrue given that 90% of deaf children come from hearing parents. Communication is the key to any healthy and successful relationship or marriage.
I was lucky enough to have been introduced to my husband Asif, also Deaf, through a friend of mine. We have a solid relationship and our strengths compliment each other greatly. We communicate through BSL, which has empowered us as husband and wife as well as Deaf parents. We have three children, Samaira aged six, Areeb aged four and our youngest daughter Rubi aged two. Both Samaira and Areeb are hearing and Rubi is Deaf. Throughout my pregnancies, we faced some communication barriers but I was fortunate to have had very positive experiences on the whole, as a result of the research I did for my book ‘Pregnancy and Birth: A Guide for Deaf Women’. I had BSL interpreters for all my antenatal appointments, antenatal classes and while giving birth. It was vital to have interpreters present in order for Asif to feel fully included in under-standing my pregnancy. If anything went wrong he was able to actively make decisions through the interpreter instead of seeing family members taking control, which is a common experience for Deaf people. Many D/deaf couples today do not share my positive experiences of pregnancy and birth because they were not aware of the available services, despite being entitled to them.
Looking back, I have been challenged by life but I was guided and encouraged to lead. The key motivation for me, which gave me the ‘fire in my belly’, was witnessing social injustices, first hand, as an Asian Muslim Deaf Woman. The key to empowerment for those who are marginalised, is having access to information to enable them to live an ordinary, or even extraordinary, life. This encompasses all spheres of life, from school, through to work, community and family life. As illustrated in my tale, having access to information in all of these areas is central to that other strand of empowerment, namely individual independence, so that D/deaf people do not become entirely dependent on communities, families or the state. In turn, access underpins the necessary framework, within which, people and communities can exercise agency to enable purposeful choices, making the most of and expanding opportunity through structures at hand. Hereby, the quality and degree of participation in those various fields of life, each of which inform the other, is defined.
- Action on Hearing Loss (2013): Statistics.
[Accessed: 16 Mar 2013].
- Department for Education and Skills (2007): Every Parent Matters. Nottingham: DfES Publications. [Accessed: 16 Mar 2013].
- Hertfordshire Hearing Advisory Service (2011): More support needed for Deaf people in Hertfordshire, says HHAS Survey [Accessed: 16 Mar 2013].
Sabina Iqbal is Chair and Founder of Deaf Parenting UK, the first ever organisation run by Deaf parents for Deaf parents. Well-known for her book ‘Pregnancy and Birth: A Guide for Deaf Women’, the first of its kind for Deaf parents in the UK and possibly in the world, Sabina has won numerous awards including the European Muslim Women of Influence Award 2010 and the GG2 Leadership and Diversity Award 2009.
Lisa Cristofolini has a special interest in current affairs as relating to the field of (in)justice. She is undertaking a BA in Human Rights and Sociology at London Kingston University.
Sabina Iqbal and Lisa Cristofolini