My name is Banane Nafeh. I am Egyptian, aged 39, currently living in London, UK. I am married to a kind hearted Indian person whom I met at Regent Park Mosque (London) more than nine years ago. I have got a 7 year old daughter who is a real asset to me especially when my husband goes abroad for work related trips. My beloved daughter is my little personal assistant. I have obviously family commitments besides my work as well.
What things do you like to do in your leisure time?
I am a student of Islamic knowledge which I greatly enjoy. I sacrifice a lot of my time to teach my daughter as I want her to excel in her education and life while I am also learning throughout this process. I like reading. I also love cooking a variety of dishes for my family, friends and others.
What is your personal experience of disability?
I have progressive muscular dystrophy with a cardiac condition since birth; and became a permanent wheelchair user since I was 6 months pregnant. My other two sisters have also got disabilities. My elder sister is also a wheelchair user and my younger sister is blind and has severe learning difficulties. Perhaps, as some doctors suggest, the fact that my parents are first cousins, could be one of the reasons why all the three daughters (including myself) have some forms of disability.
What qualifications did you need to get hired in your present position?
I hold a BA and MA in languages and translation. I am grateful to my good parents who have been a supportive force throughout my education at school and university. I went to a variety of schools with different curriculum in various countries because my father was working in the Diplomatic corps for the Egyptian government. This posed diverse challenges in front of me including educational, environmental, and attitudinal barriers that could somehow ‘handicap’ disabled people, as people with accredited impairments would normally face in these circumstances. Such social forces made me to willingly strive to normalize my life with patience, dedication, optimism and stamina (and most importantly with a gentle kind smile and a tender heart) in such a way that I no longer see myself as ‘different’. As a believer, I know that we humans, with all our deficiencies and shortcomings, are created for a reason. We need to trust our capability and be determined to use our free will to break the challenging and continuing barriers in life. We may be disabled because we cannot use some of our body functions, however, we may have been endowed with other organs/limbs that we could utilize to benefit us and others.
Can you describe your present employment and even your past employment experience?
I worked as an Arabic teacher and freelance translator/Interpreter for a number of years. I then did some voluntary work for Regent Park Mosque, Westminster Action Network on Disability (WAND) as well as for Leonard Cheshire while searching for a permanent job. Searching for a part time job took almost two years.
One day, an ex-staff of Leonard Cheshire drew my attention to an advert in ‘Disability Now’ magazine advertising for an Information Assistant post at the National Centre for Independent Living (NCIL). I applied for this post and got it in September 2007. Several years after, NCIL merged with other two organizations and called itself Disability Rights UK (DR-UK) where I am currently working as an Independent Living Advisor (or should I also say Learner as we all learn from each other’s experiences and our experiences do make a change in life).
What does your job consist of?
Through my independent living helpline, I give advice on social care funding and direct payments scheme. I am a direct payments recipient myself; I use the funding to meet my personal needs and pursue my hobbies. My advice stimulates and empowers several disabled people and their families to gain confidence, and not to give up hope, but to persistently demand from social services an adequate assessment of their needs which subsequently enables them to positively participate in mainstream society and to have the same rights and opportunities as their non-disabled peers in areas such as family life, right to parenthood, education, pursuits of hobbies, employment, economic security, political participation, housing etc…
What achievement in your work are you most proud of?
I hope that as a team we can gradually raise awareness in society about disabled people and consequently put an end to diverse structural barriers found in a disabling society.
I feel there is still a lot to do for disabled people around the world, particularly in countries that are currently suffering from political and economic instability.
What motivates you in life?
I am a Muslim believer, so my faith shapes my heart, frame of mind, identity, goals, and my entire life and fills my emptiness. It is the most crucial aspect in my life that can possibly convert every single action I do into an act of worship. Without such attachment, I will lose the tranquility and harmony of my heart and the inner fortitude of my body. Faith is to my heart as water is to a fish (see what happens to a fish when it is taken out of water!).. As a practising Muslim, I believe that God (Allah) with all His wisdom never closes a door of blessings for his creation, except that He opens for him two other doors of blessings with His mercy. Indeed, God has promised that “with every hardship there is relief,” and that “no person shall have a burden laid on him greater than he can bear’.
What advice would you give to young disabled people?
The degrees and forms of challenges/trials vary from one individual to another; and from one region to another. Register in your head that everyone we meet is also fighting a hard battle. Some children in various countries do not even have access to clean water, and this is challenging for them. Yes we do have rights but we should also endeavour to fulfill our obligations.
We should work with one another to break presenting barriers. Do not belittle yourself and trivialize any good achievement you do even if it is small. Everyone has something to offer in this world, so we should value others’ contribution. If you do not work hard and face difficulties along your way you will never taste relief when you attain victory. Go out into the field of struggles and strive to sow seeds so that you harvest and reap the rewards in the future. Everyone passes through times of sleep but we should not sink into permanent sleep otherwise we will find ourselves marginalized and left behind. Do not be angry when facing tribulations, for every minute you are angry, you lose 60 seconds of happiness. Have time management. Time is limited and precious, waste it wisely, and spend it in the best possible way.
Educate yourself for beneficial knowledge enlightens your soul, nourishes your mind, maintains your grace, guides you in life and elevates your rank in society. When you do not seek education and knowledge, someone could bring you dust and you may believe it to be gold. Busy yourself with matters that are beneficial to you and society in their exact and suitable time. Perform your task with its due right to perfection.
We need to adorn our hearts with patience and be certain that we are capable to change things to the better when times are tough. Having certainty and patience, they are like guideposts along the road. Feet of patience, keep going, for what remains is only a little. Think about what you want to do with your life. Think of consequences before taking a decision. Think of your legacy; think of what are you going to leave for this world. Energize your vision, aim for the top, set your goals higher above mediocrity, be eager for something that is really tangible not illusionary, and aim for the stars even if you get to the moon. Be a living example. You would then realize that you have accomplished a lot even if you don’t get there to the top. Congratulate your success with humbleness and assist others to succeed as well. In life, you may encounter some unhelpful people when you most need them, so collect yourself and do not rely on them; remember that even your own shadow leaves you in darkness.
Finally in my own point of view, I don’t consider a person to be disabled if s/he has a physical or mental condition that restrains his/her movements or senses. The disability is when a person is struck by a harsh cruel heart that has become naked because it has lost its beautifying dress which is care, kindness, understanding, ethics etc… The heart can become rusty like a mirror does, so it needs regular polishing. There is nothing worse than having a dead heart deprived of any humanity and glow. And I know for sure that at least my heart needs constant remedy to be revived from its weaknesses.