In part one, we explored the feelings that disabled children may have towards their mothers. This month, we will look at an example of a disabled mother and her experiences.
While the media emphasises the struggles of mothers to disabled children, rarely does it focus on disabled mothers; it is as though they don’t deserve the same recognition. Sadly for a segment of society, there exists a negative attitude that a disabled woman should not be a mother as she will not be able to fully care for her child – in other words she is not a ‘complete’ mother.
Whether you have a disability or not, motherhood is a choice and not suited or desired by all. Just because you are disabled does not mean you are ‘banned’ from the circle of mothers nor does it make every disabled woman desperate to be one. I, for one, never felt that urge to be a mother though I adore children and love my niece and nephew – it is not something I would consider as it simply it does not suit my lifestyle and physical ability, yet I have met a few people who have always dreamed of being a mother and have gone on to achieve that dream, overcoming all sorts of prejudice and discrimination.
One such person is Banane, a disabled Muslim mother of an 8 year-old girl, who endured various struggles and discrimination for choosing what millions of women choose – to be a mother. Again, it is quite ironic that if you are non-disabled woman and don’t want to have children, some would label that woman as selfish, yet if you are disabled and want children you are also deemed as selfish – the judgement that society passes on women is baffling.
Born with progressive Muscular Dystrophy of the Emery Dryfuss type and a heart condition, Benane knew that the idea of motherhood would be slightly daunting, but it was what she had always wanted and after few months of marriage, the happy news of her pregnancy changed everything. Five months into the pregnancy, her condition suddenly deteriorated rapidly as she found herself confined to a wheelchair and lost her ability to stand or walk completely following this. But Banane is a person with a positive attitude believing that “as a Muslim believer, I accept whatever Allah decrees for me. For what Allah wills comes into being in the time and manner He wills it, with neither addition nor loss, neither sooner nor later.”
Most people with disability suspect that their offspring may also inherit their condition but Banane was not worried of such thing because “As a Muslim believer, I believe with God’s help, burdens are eased. A disabled child can certainly be a bliss rather than a burden. After all, they are a creation created by the Creator.” When I asked Banane what the reaction of people was to her becoming a mother, she replied that much to her surprise, everyone was extremely happy and delighted to know about it. “My parents were abroad at that time, but my husband was quite supportive as well as my good Muslim and non-Muslim friends. My carer used to come to the ward and help me, as well as my friends.”
Unfortunately, this was not the case where medical professionals were concerned, as Banane went on to explain: “Unfortunately, most nurses’ attitudes at St Mary’s hospital were unpleasant. They were not happy that I was carrying my daughter (rested on pillows) securely on my lap as they said it was against health and safety. On various occasions, the nurses wanted to detach my daughter to be put her in her cot (even when she was awake).”
Banane had to stay in hospital for 10 days, though in normal circumstances it would have only been a few days. “They didn’t want to discharge me initially. I had a very difficult time in the ward, which was not even accessible for my needs. I felt that the nurses were monitoring every action I was doing in order to misjudge my ability to look after my daughter.” Banane explains that after several discussions, it was finally agreed that she could go home with her daughter, but just as Banane was leaving the ward, the nurse told her in a sarcastic tone: “Don’t worry if it all turns out to be a complete failure.”
In other words, the nurse doubted Banane’s ability to fulfil her parenting role: “Though I cried at the time because of the harsh words and attitude, I gave no attention to this as I put my whole trust in my Creator, Most High in Knowledge.”
Doctors were generally more supportive, though anxious, while social workers were extremely unhelpful as they were constantly questioning Banane’s ability to look after her daughter in the short and long term; social services were even threatening to take the baby away from Banane.
Motherhood can be physically and emotionally draining but so far for Banane, it is a mixture of delight as well as challenges: “I feel the joy that I am a mother. My daughter is a trust that I need to look after properly, and she offers me a lot of support too, she is a blessing. Allah is our Helper, upon Him we depend. You get what you sow in life and the next.”
I have always thought that the image of disabled women, especially in Muslim/Arab societies, makes it harder to be a wife and mother, but Banane has a different view to me, which she explained, “If it is a practising, sincere Muslim society or community, then surely it would not pose a problem. We have had so many disabled mothers and fathers throughout Muslim history who were forward-thinking and have achieved their goals in life. Disability is regarded positively in the Qur’an and in all other authentic scriptures revealed by Allah; Allah creates us in different shapes and colours to know one another and help one another – it is a sign of His Power. Prophet Ayub (AS) was praised and rewarded for his forbearance and endurance despite being tested immensely with a tremendous impairment as well as other trials.”
As human beings, we all have limitations in one way or another; we are all able in some aspects and disabled in others, hence a sense of solidarity should prevail amongst one another. Therefore, the idea that a disabled mother is less likely to be a fully active mother is far from reality.
At the end of my interview with Banane, I asked her what advice she would give to any disabled woman seeking motherhood but is scared of not fulfilling the role due to disability. Her reply was simple “Don’t let fear overpower you. Don’t be engulfed in the sphere of society’s negative influence. Rekindle your heart and mind.” Then she added, “For the Muslim sisters I add: reliance on Allah has the striking effect of helping the individual to accomplish difficult work, bear fatigue and endure fear and difficult experiences.”
While we must accept Allah’s will, we should also fight society’s conventional rules, explore all options and never let others or their prejudices dictate our life and the choices we make because quite simply, in life we make choices that we have to live with – people will not live these choices so why should they have a say or have an impact on them.
READ PART 1 HERE: Being a Disabled Daughter
Raya AlJadir starts her two part series on the different perspectives of disability and motherhood by opening her heart about how it feels to be a disabled daughter.
Raya AlJadir is an English degree graduate from Queen Mary, University of London, where she also read a Masters degree in Renaissance Studies and is currently researching for a PhD thesis. She is a freelance translator, writer and proofreader. Her main interest is promoting disability awareness, especially amongst Arabs and Muslims.